cancer patient diary - blog lymphoma patient

That's the screensaver poem, self-generating, prompted by my 2003 Kyoto trip. Not much yet, just the bare scraps of germinal existence, and it may take a few days (or weeks) to become something. But that's how poems get started, sometimes, assembling themselves automatically, without effort. In this case arising out of photographs of an experience which, as it's a couple of years old, has been mediated upon ... particularly since the BAMBOO HORSES novel that I've been working on for the last couple of years is set in the city of Yendo, a kind of analog of Kyoto.

Section 148 Entry 0002. Date: 2005 May 26 Thursday.
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Today I went to the radiotherapy department ("radiation therapy" says the signage) to have a mold made of my face. After a very friendly greeting at the reception desk I sat for a while reading TIME magazine. The reception area was cool to cold and was bright with natural light.

I felt (for no reason that I could pin down) curiously desolate. Unplugged. Disconnected. Remembered, now and then, fragments of last night's dreams. Traveling in a huge metallic subway system in a big city. And looking at a big map of Tolkien's "Lord of the Rings" world and explaining (I can't remember the details) how my own work related to this.

After I had waited for a while I was collected by a guy named Carl who took me to the mold room. On the way I mentioned that tomorrow I'll stop taking steroids and that my face, which has gotten a bit puffy, may shrink a little over the next few weeks. Carl indicated to me that this would not be an issue.

The mold room was a small room where there was a narrow table, a bit reminiscent of an operating table. I took off my spectacles and laid myself down on the table, and the two guys who formed the mold room team did their stuff.

They had a red laser mounted on the wall which put out a laser beam which they used to make sure my body was lined up in exactly the right place on the table. They put some floppy plastic film over my face, the kind of stuff you might use to wrap sandwiches in, this to create an interface between my skin and the plaster.

They then used short strips of cloth that were saturated with plaster - the kind of thing you would use to build a plaster cast. They put the wet plaster strips on top of the plastic film, someone's fingers molding the plaster down into my eye sockets. The plaster felt a bit warm but not hot. By this method they made a plaster mold of my face, which they then removed as a unit. I think the floppy plastic film fell clear from the plaster mold at this stage.

The whole mold room procedure only took about ten minutes. I was told that was about how long it would take and, by my watch, that's about how long it did in fact take.

The result was a mold of my face made from strips of plaster bandage. The next step will be to fill this hollow mold with plaster to make a solid bust of my face. After that, the solid plaster bust will be coated with some kind of hard clear plastic.

The result will be a hard clear plastic mold which reproduces the outlines of my face, and which can be marked up with lines and dots so it can be used for positioning X-ray machines.

After leaving the hospital I got the bus to the Britomart area, near the ferry terminal. I was almost out of time to catch the twelve noon ferry so I tried to run, but all I could manage was a kind of awkward accelerated shuffle. However, the ferry departed a couple of minutes later than I had expected, so I caught it with time to spare.

And so began my very low-key introduction to the world of radiotherapy (or, following the signage, "radiation therapy"). I've identified my most important task at this stage of my treatment as being mood control, pure and simple. Deal with that unmotivated sense of emptiness, of desolation.

Section 148 Entry 0003. Date: 2005 May 27 Friday.
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Today I attended a radiation therapy orientation held under the auspices of the Cancer Society at the Domain Lodge on Boyle Crescent. It was in the form of a PowerPoint presentation given by Carl, one of the mold room technicians who made a plaster mold of my face yesterday.

Yesterday I thought I was completely free of stress, but in retrospect I can't have been, because I failed to register either Carl's ethnicity or his accent. Today it was very clear to me (I was genuinely calm, I suppose) that Carl is from South Africa. There are quite a few South Africans working in the medical system here - offhand, I can think of an anesthetist, a radiation therapist and a young doctor - so I've had some experience with the accent over the last few months.

Carl gave a well-organized and good-humored presentation which took us through the nuts and bolts, such as parking and showing up at the reception area, and covered the business of the simulation, a session where the experts gather the data on your body that they need for the software that will be used to generate your actual treatment plan, through to the actual treatment.

Side effects vary, but may include:-

(i) tiredness. Advice: drink lots of water to help the body get rid of dead cells.

(ii) skin reaction. Advice: use "a cream called aqueous cream". Dab it on: don't rub it on.

(iii) constipation or diarrhoea. Advice: get a referral to the dietician.

(iv) hair loss. Advice: hair loss will be localized, and will only occur in the area actually receiving radiation.

As far as the brain is concerned, there may be additional side effects, such as nausea, depending on which part of the brain is being treated. This is something I can ask about later, when I see a doctor.

I still don't have a schedule for radiotherapy but once thing I learnt today is that the side effects may continue to build up for a week and a half or so after the administration of the radiation is finished. And that there is typically a follow-up check four weeks after the end of the radiation treatment sessions.

The treatment itself is painless, soundless and noiseless, and is done with a linear accelerator, this being an X-ray machine which generates radiation from electricity. A machine, in other words, which does not contain a radiation source: there is no lump of radioactive material inside the machine.

If it's necessary to make a mask then "We leave the nose and mouth open because it's very important to us that you keep breathing."

The purpose of the mask is twofold. Not only does it allow markings to be made for the correct positioning of the radiation machines, but it also minimizes the risk of the patient moving. We saw a picture of the kind of hard plastic mask that is being made for me, this labeled as an "Ultros shell," and also a picture of a simpler mask, designed for shorter treatment courses (a week or so, perhaps) labeled as an "Orfit shell."

With reference to the mask, in response to questioning, Carl elaborated on the problem of someone's face changing shape because it swells with steroid use or shrinks after steroids are tapered off. This is no problem because the mask can, if necessary, be padded with special material, or heated and reshaped. Or, if it's really necessary, they can make a new mask. No problem!

After Carl was done, Margaret from the Cancer Society stood up and spoke, focusing, if memory serves, on counseling and support services that are available. I came away with a flyer on yoga classes - once I'm through with all my treatment I'm thinking of doing some yoga as part of a physical rehabilitation plan.

Today's radiation therapy orientation was given to an audience of seven in a very clean well-lit room with plenty of natural light. Afterwards, I went upstairs to the cancer library, another very clean room, again flooded with natural light. They have a useful collection of books. It is possible to borrow three titles for one month, and I borrowed two which looked interesting.

One of these books is "Snake Oil And Other Preoccupations" by John Diamond, a British cancer patient who died in 2001. He was a journalist, and apparently the book includes some pieces taking a sceptical look at "complementary medicine."

The other book is "Time on Fire" by Evan Handler, who I take to be an American, who apparently had leukemia. The book was first published in 1996. I don't know if the author is still alive.

Update July 2005:
I got an e-mail from Evan Handler saying he is alive and "until recently" was starring in the HBO television show “Sex and the City”, playing the role of Harry Goldenblatt. He's working on a new book, a follow up memoir to "Time on Fire". The new book is called “It’s Only Temporary...The Good News and the Bad News of Being Alive” and should be published in America in 2006. EH confirmed that "Time on Fire" "relates a story that happened between 1985 and 1988 or so".

Since I got sick the world seems to be full of things to read about cancer - I've noticed a string of articles touching on the subject in the newspapers, for example - and, naturally, I have an interest in this kind of thing.

My parents had come along for the radiation therapy presentation, and afterwards we dropped by at the Takapuna Public Library, which is part of the same public library system as the Devonport Public Library, but which is considerably bigger. (My spell-checker doesn't like "Takapuna" and suggests "Tampon" instead, but I issue a veto.)

I borrowed four more books including (to reread, since I'm sure I've read it before) Stephen King's short story collection "Everything's Eventual".

The introduction includes a comment that I don't quite understand. Pretty much every time I read an American book there will be at least one cultural reference that I don't quite get. I can identify "tamales" as being some kind of Mexican food, for example, but I can't pin it down closer than that, and I don't have a mental image to match this "stucco" that I keep reading about.

In this case the mystery comment, which dates to the year 2002 or thereabouts, is as follows:-

My story, when it was done, was quite long. Susan Moldow, my editor at Scribner (as an X-Files fan, I call her Agent Moldow ... you work it out), called one day prompted by Ralph Vicinanza and asked if I had anything I'd like to try in the electronic marketplace.

I can't do the working out. I'm vaguely aware of the existence of a TV show called, I think, The X-Files, which I (perhaps not quite correctly) understand to be a series of stories about science fiction menaces which are combatted by agents from either the FBI or some FBI-ish organization. But I've never seen this show so I can't figure out if "AGENT Moldow" is supposed to be some kind of obscure pun (I'm not much good at puns) or a reference to something else that I'm completely missing.

Whatever the reference I'm not getting, it's to something in American culture, not to something here in New Zealand. But I occasionally have similar experiences with New Zealand things, since I've been away in Japan for seven years, and haven't entirely caught up.

One thing that initially puzzled me was a "life coach". The first time I saw this term was in a job advertisement. Someone was wanting people to work as "life coaches". Later, I found out that this term also seems to be in use in Britain and the States, so it's not just a quirky New Zealand thing. Rather, it's a new evolutionary twist in mainstream Western culture that has taken place while I've been on Spaceship Japan.

As far as I can figure it out, a "life coach" is someone you pay to act as your bossy big sister or something like that. I don't think I'm cut out for that kind of job, and I'm surprised that it's the kind of thing that someone would pay money for. But I get the impression that it's quite a big business.

So that was my day, then. The good news was that I had no trouble with mood control today, and felt upbeat and positive. And so I should. I'm getting a good deal, and have done all the way.

I've just been dipping into Handler's book "Time on Fire" and sampling his account of the waiting room hell that awaited him when he was first admitted to a hospital in New York. Wait, be ignored, get interrogated, wait.

Me, the first time I was admitted, I showed up at a reception desk, and the people there paged my brother-in-law, who was on shift as the Duty Manager of the hour, and he showed up a couple of minutes later and escorted me to my room ....

If I was going to choose a title for an account of my personal encounter with the hospital system then a good title would be "A Dream Run Through The System."

I note that Handler's book, first published in 1996 and so presumably dealing with events somewhat earlier, gives an account of patients smoking in hospital. I have no idea if patients were allowed to smoke in Auckland Hospital back in the 1990s, but these days that's an absolute no-no: whether you're a patient or a staff member, if you want to smoke then you have to physically leave the hospital's property, so, occasionally, when arriving at the hospital, I see a patient in street person mode, complete with a drip stand, huddled against the increasingly chill weather and puffing desperately on a fag.

Later ....

I find a note at the back of "Time on Fire" saying that the author was "cured through bone-marrow transplantation in 1987", so it seems that this account is from the 1980s.

Section 148 Entry 0004. Date: 2005 May 28 Saturday.
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Today I got two significant letters, one from the Government and one from my wife. Both letters have a similar effect: they help integrate me into reality. Help ballast my free-floating existence.

The letter from the Government tells me that I'm registered to vote. The one from my wife is a daughter update revising baby Cornucopia's height to 75.3 centimeters and her weight to 9.2 kilograms ("with clothes and a nappy").

The letter, dated Sunday 22 May (but postmarked on the 24th) says, in part:-
On Thursday Cornucopia was celebrated for her birthday at the daycare. It was for children who were born in April & May. In her class there were three babies including Cornucopia who were born in April & May. She got some sweet and a card which was in a elephant shape blue handback made by a paper.
With the letter, fresh photographs of Cornucopia, at about thirteen months, standing, smiling, looking very mature. Hair currently brown, ethnicity inscrutable. (I say that the hair is "currently" brown because hair color can change as a child grows up.)

One Japanese mother, seeing my wife with this baby at the local ward office, asked "Doko no ko?" Literally, in a word-for-word translation, "Where of child?" My wife didn't at first understand the question, which turned out to be a query about the child's ethnicity.

If you were to look at me then look at her you'd see similarities. Her broad forehead is mine and so is the structure of her cheekbones. Otherwise, it's hard to say exactly where she's originated. She's a one-of-a-kind, a Cornucopian.

Two articles in today's issue of the New Zealand Herald caught my eye today, both bearing on the issue of one's place of origin. One, on page A10, is about foreign-born doctors in New Zealand. Apparently an astonishing forty percent of the doctors working in New Zealand were born in some other country.

This is apparently, at least to a certain extent, ethically negative, since it represents, at least to an extent, a rich country (New Zealand) stealing trained talent from poorer countries (such as South Africa). To quote:-
The cost to South Africa of losing 600 medical graduates to New Zealand is more than $50 million, the British medical journal Lancet has revealed.
As I've already noticed, it's South African immigrants who are helping staff the hospital where I'm being treated, so I have to count myself as one of the beneficiaries of this medical immigration.

The other article is on page A3 and is about a speech given in the town of Orewa by Winston Peters of the New Zealand First party. In fact, it's not one article but a set of two articles: one credited to Ruth Berry and the other to Claire Trevett.

Winston's speech seems to have been less than entirely positive about Asian immigration to New Zealand, and apparently he sees the ruling Labour government as having an "ethnic engineering and re-population policy".

The audience apparently got emotionally involved with this. To quote from the Trevett article:-
Particularly harrowing tales - like whether Asians will be the second highest population group in New Zealand - are met with "oooohhhh"s and "Jesus".
Is the level of immigration decided by the New Zealand government too high? A poll published on page A3 has 36.2% of respondents saying yes, too high. But 42.9% voted for "About right" and 13.5% for "Too low".

My own take on this situation is that immigrant-bashing is an easy option for political zeros who have nothing positive to offer.

Section 148 Entry 0005. Date: 2005 May 30 Monday.
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Today I felt about as energetic as a plate of cold spaghetti, reluctant to wake up and even more reluctant to get out of bed. The weather was cold, wet and windy. Winter had most definitely arrived. However, I had a hospital appointment, so I had no option: I dragged myself out of bed and was soon on an early ferry heading across the harbor to the city of Auckland.

At the hospital, I once again laid myself down on the narrow stretcher in the mold room. The red overhead laser was used to line up my body a the clear plastic mold was fitted to my face. It had a strange smell which reminded me of liquid detergent. Side flaps were fitted to the mask and a headrest was prepared and then marked with my name. To keep my head in the same place for the X-rays, I will always be lying on the same headrest, which will be stored with the mask.

There then followed a waiting room delay, after which I was escorted to a room marked "SIMULATION 1", which was dominated by a big X-ray machine. In this room they had a green laser. As far as I can recall, this is the first green laser I have ever seen anywhere.

Two things happened in this room. One was that I had a CAT scan and the other was that the X-ray team used indelible markers to put lines on the hard shell of the mask. However, I find myself already unable to recall the order of these events.

The third and final stage was for me to listen to a doctor talk about the possible side effects of radiation therapy, after which I signed an informed consent form. The possible side effects include everything from a lessened ability to concentrate and a loss of the ability to multitask to malignancy.

The doctor didn't seem to think he could quantify the risk of what (to be honest) we would have to call brain damage, but he did put the chances of the treatment itself resulting in a malignancy at one in a thousand. It seems that nausea is a possibility, and the nausea, like any other side effect, may develop after the radiation has been administered. That night, for example, or a few days later.

I came away with a piece of blue cardboard giving the details of my first treatment appointment, which is at 09:00 on Tuesday 21 June. This is when they start using X-rays to give me radiation. There will be twenty treatment sessions in all, delivering a total of thirty grays of radiation.

I came away from the hospital feeling flat, wintry and subdued, and, during the trip back to Devonport, I spent some time staring at recent photos of my daughter and thinking of a different world.

Section 148 Entry 0006. Date: 2005 May 31 Tuesday.
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Today's big event was a magnetic resonance imaging scan, which involved, as usual, lying down on a narrow stretcher, being slid into the cramped tunnel of the MRI and listening to the weird sounds of the machine in action -- incredibly loud and discordant sounds suggestive of aliens trying to hammer their way through the walls of the universe.

Everything went smoothly except the first attempt to inject a fluid into a vein to provide contrast. This started okay but then the vein abruptly collapsed and it proved necessary to go find another one.

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