literary blog by Hugh Cook

Section 144 Entry 0001. Date: 2005 May 11 Wednesday.
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This week I kept an appointment at Auckland Hospital on Monday 9 to be checked out to see if I'm fit enough to be admitted for my sixth and final chemotherapy session next week, on Monday 16.

The answer was a provisional yes, though I will be fronting up at the local branch of Diagnostic Medlab here in Devonport for a blood test on the morning of Friday 13, and the blood test results could conceivably lead to the sixth cycle being postponed.

When I was admitted to hospital for the fifth cycle, the results of a blood test taken before the cycle started were, I was told, perfect:-

hemoglobin = 119
white cell count = 10
neutrophils = 9
platelets = 296

I've been told that a normative hemoglobin count for an adult male is about 120, so I have every reason to be satisfied with 119.

During my Monday health check, the doctor asked about my eyesight and did a basic eye check, getting me to say which of his fingers he was wiggling. I assume that I'm always getting asked about my eyesight because I'm on steroids, which have the potential to do eye damage.

In my own case, both eyes got badly messed up by the cancer (the cancer being, in this case, non-Hodgkin's lymphoma).

Back in December, the left eye was close to being blind because swelling in the brain had crushed the optic nerve, and the right eye was full of vitreous junk - there were so many floaters in the eye that it was like seeing through a snowstorm, and reading fine print was a stop and start process involving waiting for a small patch of clear vision to drift across the text.

Now things are much better.

Although I was warned that the damage to the left eye might well be permanent, it has been slowly recovering, month by month, to the point where I can see colors, interpret (in broad outline) photographs and read newspaper headlines. There are zero floaters to interfere with the gradually improving vision because earlier in the year the left eye underwent a vitrectomy, the surgical removal of the jelly in the eye (done for biopsy purposes, in an attempt to get a better handle on the nature of my cancer.) (In a vitrectomy, the jelly of the vitreous is surgically removed and is replaced by an artificial fluid; subsequently, the body generates its own fluid.)

My vision through the left eye is good enough for basic navigation - if I close the right eye I can walk around the house and out into the garden. But the world that I see through the left eye is a bit blurred, and also it's buckled: straight things like the cracks between the vertical boards of the boundary fence are bent in a wriggly manner. Also, I get a certain amount of strobing in the left eye. I'm not always conscious of it, but sometimes it's definitely there. I interpret this as the damaged optic nerve generating junk signals.

The other problem with my left eye is that my night vision is way down in that eye. Still, the fact that it has been improving, slowly but steadily, has been heartening.

As for the right eye, it's still clouded, to an extent, by floaters, but has been improving rather than deteriorating. While I prefer to read large print books, it's now much easier for me to read a newspaper or tackle ordinary print books. The oncologist in overall charge of my case thinks that it is probably the chemotherapy which has brought about the improvement.

Earlier in the year I had a problem with raised intraocular pressure in the right eye. My ophthalmologist didn't know why the pressure was up but speculated that poor drainage might be the reason. I was prescribed an ophthalmic steroid, which I used, and the pressure normalized. My ophthalmologist couldn't say why it had normalized (there are a lot of unknowns in medicine) but decided that I'd try life without the ophthalmic steroid for six weeks and see what happened.

I'm scheduled to see the ophthalmologist again next week, on Thursday 19th. (If I'm having chemotherapy, I'll have to get myself unhooked from the drip for a couple of hours so I can wander over to the eye clinic to keep the appointment.)

So the eyes remain an issue, but, so far, there's no evidence to suggest that I've suffered any eye damage from using the oral steroid I've been on all this year, dexamethasone, which was initially prescribed to reverse the swelling of the brain which had caused partial paralysis of my left side.

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:-