cancer patient diary - blog lymphoma patient

Section 149 Entry 0001. Date: 2005 June 05 Sunday.

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The news from Japan is that baby Cornucopia can now climb stairs. She has acquired this ability at the age of thirteen months.

The fact that my baby daughter can climb stairs is a little bit worrying because the Internet connection is in a room at the top of the stairs, and once you get on the Internet you can find instructions for making nuclear weapons, blueprints for making aerosol bombs, chat rooms where you can sell your snot to depraved lunatics and all kind of other temptations which I think my daughter, at her tender age, is not quite ready to handle.

Still, at the moment it's not my problem, because I'm here in New Zealand and she's in Japan.

I anticipate a whole bunch of problems when I finally get back to Japan, one of them being to successfully identify myself to my daughter, who is inevitably (and naturally) going to be asking herself "Who the hell is that!?" Another problem: to adjust to the strains of on-the-spot fatherhood.

Loving your child is very easy when the child, delightfully photogenic, is in a different country. Not so easy if the child is screaming while you're trying to sleep.

As a married New Zealand woman, the mother of two small children, recently said to me:

"I really adore my children while I'm at work."

Anyway, the news from Japan is that mother and child recently went on a daycare picnic, for which event my wife took a day off. They traveled to Nakayama, a railway station on the JR Yokohama Line, then walked twenty minutes to a large park called Kenritsu Shinki No Mori Koen, which translates as Prefectural Four Seasons Forest Park.

My wife writes:-
The meeting time was 9:30. After the headmaster's speech, we prayed and sand some songs and took photos of the class members. Six out of the seven babies in Cornucopia's class and their parents were there. After the photos we moved to a grass field and played games. And then moved to a lunch place. I took cheese andwhich and banana sandwich for Cornucopia. She ate all and had some biscuits.
The group prayed because the daycare center is run by a branch of one of Japan's protestant churches. We were never asked any questions about our religious affiliations, but it was made clear that there would be occasional prayers at the daycare center, and we were told (reasonably enough) that if we had a problem with this then that particular daycare center was probably not for us.

As for the headmaster's speech, the reason why there was a speech was because the picnic took place in Japan, and it would be difficult to imagine anything in Japan starting without some kind of ceremony.

The latest letter from Japan, quoted above, has been the big event in my otherwise pretty uneventful life. Nothing much else has happened except that I twice managed to slice into the ball of my left thumb with a very sharp carving knife. Fortunately, these were extremely small slices. Even so, I felt a bit embarrassed at my own clumsiness. I'd blame brain damage from radiotherapy, only my radiotherapy hasn't even started yet.

The other thing that happened recently was that I went with my parents to see the movie Downfall, which is about life and death in Hitler's bunker during the final days of the Third Reich. This was a very long movie but it didn't seem long while I was sitting through it. It convincingly came across as authentic.

The movie's weak point is that it might be a bit difficult to follow for anyone who doesn't know the historical basics. In particular, it would help to know a little about Albert Speer, Heinrich Himmler and Paul Goebbels.

For my parents, who grew up in the Second World War, the historical background was no problem. My mother said that the scenes of Berlin being devastated by the Russians reminded her of London during the Blitz (when London was being devastated by the Germans.)

One of the actors in the movie was playing the part of a German general, Alfred Jodl. I knew nothing about this guy Jodl and, though I was paying attention to the movie, I couldn't tell you what we learnt about him, because I didn't notice his role.

Then, at the end of the movie, before the credits rolled, we saw photos of the key actors, and were told a little bit about what happened to the people they were playing. One of the photos was labeled as being of "Jodl", and that was the first point at which I knew there was a Jodl in the movie.

Alfred Jodl, apparently, born 1890, died 1946.

Section 149 Entry 0002. Date: 2005 June 06 Monday.
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And so now it's early June and I'm in a holding pattern, sort of, waiting for radiotherapy to start. Radiotherapy will take four weeks and what I keep hearing is that it will quite possibly make me tired. How tired I don't know, but I don't like the idea of being tired.

In the aftermath of chemotherapy my energy levels already seem to be severely depleted and I don't like it. It's frustrating to get a certain amount done and then run up against a wall, energy point zero. Still, life continues, and I do manage to achieve something every day.

When I went round to my sister's place today her two children were in angel mode.

"Peter's raining," said my sister.

This didn't quite seem to make sense. Neither kid is called Peter and I couldn't think of any other contender for the name so I queried what had been said. It turned out that actually her words were "Peace is reining". I'm still having trouble with the New Zealand accent, so I experience the occasional listening problem which gives me a hint of what it might, perhaps, be like to experience low-grade brain damage: to start misperceiving and misinterpreting the world.

My sister asked me about the verdict on my flu shot. Should I get vaccinated against this year's set of influenza viruses or would the shot do me more harm than good?

"The doctors said that I could go ahead and have the flu shot if I wanted to," I said. "They said it wouldn't do any harm. But because my system's been knocked around by chemotherapy it probably wouldn't react to the flu shot so I probably wouldn't develop immunity as a result. So I decided to skip it."

At my sister's place I was able to go online and access my web-based e-mail. Just as well, otherwise I would have missed a whole bunch of important messages, including the one starting "Qualityrxdrugs are avail-able at specialprices. Ttake vantages of eeasier cybers ..."

Having done my e-mail and having updated my web site I found myself with a little time on my hands so decided to do a bit of online research into the side effects of having radiation therapy to the brain.

I thought I knew pretty much what to expect but I got a couple of surprises. The first unexpected revelation was that the side effects of radiation therapy to the brain may include a reduced tolerance for cold weather.

This seemed bizarre - in fact, it seemed like the most bizarre statement I've heard all year. I couldn't figure out the mechanism. How does radiation make it more difficult for you to handle cold weather? I had the sense that I was getting a glimpse of a mutated reality where the known and expected universe skews into the improbable.

What I also learnt is that radiation to the brain can actually kill you, a point I don't remember anyone having made to me. What's more, death can follow long after your treatment ends. You can end up dying of radiation necrosis years after you were irradiated.

Did I get told that during the informed consent procedure? Maybe. But, if so, it's totally slipped my mind.

The problem with informed consent procedures is that they tend to be very easy to forget. Why? Because they are generally remorselessly low key, reminiscent of the perambulations of a hedgehog rather than the onslaught of Tyrannosaurus rex. Nobody who takes you through an informed consent procedure seems to have any grounding in the dramatic arts, so the potential firecracker negatives are delivered as so many damp squibs.

When overhearing an informed consent procedure for a blood transfusion, for example, I didn't hear the informer say "We have a statistical license to kill the occasional patient with this procedure, and maybe we'll kill you." Instead, what I heard was more along the lines of "Of course, there is a very slight risk of getting HIV or hepatitis, but the blood if very carefully screened, and we take special care with the blood given to chemotherapy patients, so the risk is minute."

Informed consent procedures would be more memorable if they were pepped up a bit. Think of the intellectual equivalent of hot curry rather than mashed potatoes. For radiation therapy to the brain, we could start the informed consent process with something from Wagner, something well-known so the patient isn't distracted by any "What's that?" thoughts - I have in mind a piece which I think is called "The Ride of the Valkyries".

Then we could have a word flashed up on a screen in big red letters, the word being "nekros", the Greek for "dead body" (kettledrums in the background at this point, I think). This could lead naturally to "necrosis", the English for "death of a part of the living flesh", which can be used to introduce the subject of radiation necrosis.

Done properly, with a suitable array of multimedia effects and with canned laughter where appropriate, such a presentation could leave the patient with an indelible vision of doom: a world of damaged zombies staggering mindlessly out of the radiation suites, necrotic spaghetti churning feverishly in their brains.

(Strictly speaking, there is no scientific evidence for the claim that "This kind of treatment may potentially reduce your brain to spaghetti", but, in aiming for memorability, we have the whole world of horror movies to compete against.)

In looking for data on radiation therapy I ended up consulting two web sites, one, ww2.cancer.org, bearing the words "American Cancer Society, Inc." and the other, www.cancer.gov, bearing the words "National Cancer Institute".

On each, I found the same message about radiation necrosis: there is a small but real danger that radiation therapy to the brain may result in tissue death, which can conceivably lead to the patient's demise.

The American Cancer Society site says:
"Sometimes a large area of dead cells, radiation necrosis, forms at the site of the radiation. This occurs months to years after radiation is given. Patients with radiation necrosis generally do better than patients whose brain tumors come back. Nevertheless, a small number of patients with radiation necrosis do poorly or even die."
The quote is from:-

http://ww2.cancer.org/docroot/
ETO/content/ETO_1_4X_Side_Effects_of_
Radiation_Therapy.asp?sitearea=ETO)
The National Cancer Institute site says:
"Radiation sometimes kills healthy brain tissue. This side effect is called radiation necrosis. Necrosis can cause headaches, seizures, or even the patient's death."
The quote is from:-

http://www.cancer.gov/
cancertopics/wyntk/brain/page17
My own working assumption is that I'm not going to die from my upcoming radiation therapy. However, it's within the realms of possibility that I could suffer a degree of brain damage as a consequence. This helps encourage me to push ahead with the proofreading of my "Bamboo Horses" novel as fast as possible, hoping to get it done before I start going one-on-one with the linear accelerator.

The bad news is that even now, although I haven't even started my course of radiation therapy, there are occasions on which I feel brain damaged. That being so, how am I going to differentiate the consequences of X-ray damage from the ordinary functional deterioration caused by, for example, lack of sleep or disuse of the relevant fractions of the brain?

Today, for example, I found myself getting driven crazy by a hyphen problem. Should "34", as in "Chapter 34", be "thirty four" (no hyphen) or "thirty-four" (hyphenated). Both ways looked natural to me.

In the end, I grabbed hold of a book called "Style Book" (GP Publications, 1995), a book which I checked out of the library recently to solve precisely this kind of problem. The index had a number of entries for "numbers", including one which led me to section 3.50, which indicated that the hyphenated form is the correct one.

Daily life, conveniently, supplies us with a constant succession of small problems like this one, a procession which efficiently distracts the mind from larger conundrums such as "Am I destined to disintegrate into a writhing heap of necrotic spaghetti with a jellyfish IQ?"

Meantime, daily life continues, bringing with it daily events and daily conversation. Excerpted from the stream of daily conversation, a joke:

"Why is parenting like intravenous morphine? Because it's great stuff, but it's important not to exceed the therapeutic dose."

As for daily life, well, my mother has almost finished the embroidery for her latest tapestry, a wall hanging featuring pictorial elements which are symbolic of the lives of various members of the family.

For baby Cornucopia, for example, there is a version of Hokusai's famous picture entitled "The Breaking Wave Off Kanagawa", and a couple of other things, including the Chinese characters giving the name of Cornucopia's daycare center in Yokohama, which is, literally translated, something approximately like "Yokohama Beloved Children Garden".

Other symbolic elements for other members of the family include the Great Wall of China spilling down into a counterfactual bed of flowers. (While on a visit to China, my mother visited the real Wall, so knows that it doesn't really descend into a flower bed, but embroidery, like other fictions, allows you to revise reality as you wish.) Also on the wall hanging, there's a god, holding a fish.

"There's a pin coming out of that god," said my father.

And so there was.

My father, for his part, has just finished a bell rope, an elaborately spliced artefact which descends from the clapper of a kind of idiophone known as a "bell". This particular bell rope is destined to end up in the Maritime Museum.

The bell rope is, I guess, a kind of knot, or, at least, an artefact which is produced by the same skillset that is used to produce knots.

My personal world of knots starts and ends with the granny knot. Or does it? No. Now I think about it, I also know how to tie my shoelaces, and I assume that involves something which should technically be called a knot. And I assume the same can be said for whatever shape it is that I produce when I knot my necktie. But the world of knots is much more complicated than that.

My father has a huge book of knots on his bookshelf, "The Ashley Book of Knots" by Clifford W. Ashley which runs to six hundred and twenty pages, a book which introduces us to such delights as the kellig hitch and the four-strand backhanded splice.

This book was first published in 1944 by Doubleday, Doran and Company. The edition my father owns is a Faber and Faber reprint which came out in 1993 -- ISBN 0 571 09659-X.

Opening it at random to page 530 I find a passage saying "There are four shivs to each block, but the fall is divided into two hauling parts and two standing parts".

I look at this and it makes no sense at all. Maybe because it's an intellectual artefact from a culture which is alien to me. Or maybe because my brain has done a covert transmogrification into something not quite cerebral. (I don't think so, but, then, I'd be the last to know.)

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