This is part of the full text of the medical memoir "Cancer Patient" written by Hugh Cook. The full text has been published online on a free-to-read-online basis. This autobiographical non-fiction account deals with the author's initial health problems, diagnosis, and treatment with chemotherapy and radiation therapy.
The complete text of "Cancer Patient" is here on this web site but is also available for purchase from amazon.com as a proper printed paperback book. The full text may also be purchased as a download (a PDF file) from lulu.com for US $5. Go to lulu.com/hughcook
For a chapter-by-chapter breakdown of what's in the book (in its online version, in the PDF version and in the paperback version), see:-
Table of Contents
CANCER PATIENT is a medical memoir which deals with the author's autobiographical experiences which involve, amongst other things, chemotherapy, radiation therapy, a brain biopsy, a lumbar puncture (and then some more lumbar punctures), treatment with Ara-C, treatment with vincristine, treatment with methotrexate, treatment with radiation from a linear accelerator, and a vitrectomy (an operation to remove the jelly from an eye). This is a non-fiction account but it does contain a couple of fictional stories, clearly identified as such, and it also includes some poetry.
The author's life as a cancer patient is not entirely disease-focused. Rather, he has time to work on his writing, to enjoy Easter and to eat couscous. Chemotherapy continues. The author undergoes more lumbar punctures. A New Zealand ophthalmologist discovers, in the author's right eye, laser scarring caused by a laser which was used on the author's eye at a Japanese hospital. At home, the author runs a temperature, but, playing the role of the bad patient, takes a risk and decides not to report the elevated temperature to anyone.
* * *
Monday 28 March 2005.
Easter was bright, noisy, sunny and social, garish with the voices of children. Talking, eating, drinking wine - that was enough to leave me exhausted by the end of the day.
On Easter Sunday I was at my sister Catherine's place when the phone rang. It was the Easter bunny calling with the first clue for the children, Miss Two and a Half and Master Almost Five Years Old.
The first clue was the letter box. Loot bags in hand, the children set off, and retrieved shiny Easter eggs from the letter box, plus a piece of rhyming verse giving a clue to the next treasure location. Step by step they discovered their way to each cache.
The very last cache was a BIG one which included not just stuff for the littlest ones but, also, Easter Egg packages addressed by name to individual adults, including me.
Sunday, the Easter egg hunting day, was a family only day. But today, Monday, other parents showed up at my sister's place, bringing with them other children for an even noisier, more active time, creating a warm, active world ... a little exhausting to be a spectator to.
Today Monday, at my sister's place, I ate couscous for only the second time in my life. The first time I ate it was in Morocco, years ago. And yesterday, Sunday, I was introduced to a kind of spread which looks a bit like pate but which apparently is based on eggplant and is called babu ghanoushi (say "genoosh").
Easter, then, was a break from the routine. Tomorrow, Tuesday, the world resumes as normal, and for me "normal" will include showing up at hospital to have a lumbar puncture so (a) yet another sample of cerebrospinal fluid can be taken and (b) so I can receive another injection of the anticancer drug Ara C.
* * *
Friday 1 April 2005.
I got admitted to Auckland Hospital at 10:00 yesterday and by 14:00 today I had received three different forms of chemotherapy.
Starting at 08:00 this morning I had a huge bag of filthy yellow methotrexate administered by IV over four hours, finishing about 12:00. Additionally, at one point a small quantity of vincristine (a small syringe full of the stuff) was administered by being injected into an IV line.
So I had methotrexate and vincristine to start with. Then, at about 13:00, I had my third chemotherapy drug, Ara-C, administered by a needle into the spine. I hate these Ara-C lumbar puncture procedures. Objectively, the discomfort is not great, but I'm uncomfortable with the very idea of someone shoving sharp steel into the area which houses my broadband wiring.
Today I was tired, and, during the lumbar puncture procedure, my tension dripped into hot sweat. I could feel it running off my skin in big soggy drops.
And now I have another three days in hospital to complete this, the fourth of my five-day chemotherapy cycles. Once the all-poisoning methotrexate has had enough time to hit the cancer cells hard, folinic acid will be used to put the methotrexate out of action. I will not be released until my methotrexate levels have dropped to a safe level.
Today I enquired as to what would happen if I did not receive the folinic acid injections -- eight or more of them given into the IV line at six-hourly intervals to switch off the destructive methotrexate, which kills not just cancer cells but ordinary cells too.
"Someone told me I would melt."
This, apparently, is not true. Absent the antidote, you don't bubble down into a slurpy pool of cockroach gloop. Rather, what happens is that your liver takes a hit. Also, I found out why it is important for the pH of my urine to stay at eight or more while I have methotrexate in my system: if the pH is not at least eight then there is the danger of the methotrexate getting deposited inside the bladder, causing problems.
Another Ara-C lumbar puncture awaits me on Monday, it seems. Arch your back like a cat and someone puts a needle between two vertebrae, draws off a sample of cerebrospinal fluid (this, at least, is what is being done in my case) and then injects the Ara-C.
At this stage of the fourth admission cycle, I'm feeling down. Although I'm trying to structure my hospital vacuum rationally, allocating time for sleeping (not always easy to do in a world interrupted by blood pressure checks, the beeping of malfunctioning IV machines, call buttons summoning nurses and, on occasion, other people's cellphone calls), reading and writing, at times I fall victim to a kind of "lost in the void" feeling, as captured by the following poem, which I've written during this admission cycle, a poem called IN THE RUIN OF MY COLLAPSED LIFE:
I am lost in a world without platforms.
Peering through a blur of squashed fishes
I look in the darkness and find
Nothing but the eye of a needle.
Randomized choice: this is my problem.
Cut free from my timetables, alienated
Into the void of options.
My rectangular certainties
A bifurcating octopus,
In the darkness of nowhere
The trees are punctured by petals
Huge with anthracite.
We cannot build a world
Out of cabbage leaves.
At liberty in the desolation of a collapsed context
From a pinnacle of terrifying black
A volitional vomiting of watermelons,
Blurts through the night.
Job, house, baby, wife:
A slurry of meatloaf.
Walking on dissolving shadows,
I find my alarm clock,
Today, in Japan, my baby daughter Cornucopia, not yet quite one year old, will be having the first of her life's commencement ceremonies. Japan is very much a nation of ritual, and anything that begins must always begin with a ritual. And so today, at the daycare center which has accepted Cornucopia for the coming year, the year starting right now, there is what my wife has characterized as an "entering ceremony".
In subsequent days, Cornucopia will start attending the day care center, initially following a carefully thought-out acclimatization schedule involving just one hour of motherless day care tomorrow Tuesday (09:00 to 10:00) and building up to full strength day care, eventually hitting the maximum permissible, which is 07:30 to 18:30.
My wife writes:-
"This is regular day care for Cornucopia once I go back to work. It would be very long day for her at the nursery school. I feel sorry to her a little."
I learn from a letter received today that my daughter's daytime nap futon is Futon Number Two; that her class name is "sumire," meaning "violet;" and that her class color is pink. She has, of course, been issued with a regulation cap in the regulation pink.
I have no option. I must persevere, recover and pick up the pieces. Rebuild a world. Meantime, drugs, IV needles, junkie veins, broken dreams, a steroid user's puffy face and internal bleeding.
Today, blood in my right eye: a small smudge of red on the white, and, pooled down beneath the eyelid, a smudge of red a third of the size of my thumbnail. The result of a single broken capillary says the doctor who cheerfully took a look at it. And, yes, I can blame the dexamethasone for this, and, no, I don't have to worry about it, as it will resolve itself in due course.
And so now I lie here, waiting, two fluids running into my through intravenous lines. One is sodium bicarbonate, part of the campaign to keep my pH at eight or above. The other is a mixture containing 0.15% potassium chloride and 0.9% sodium chloride. I am being flushed, cleansed, purified.
This, as I have noted, is the fourth of my scheduled five-day chemotherapy cycles. All going will, there will be just two more cycles to make a total of six. Then a break of a few weeks, then a month or so of radiotherapy. All going well, this whole thing ends. This year. Some time.
* * *
Thursday 7 April 2005.
Yesterday afternoon Alan and I got the ferry across to Auckland, walked up Queen Street to Aotea Square and went and saw the Chinese movie "House of Flying Daggers", a highly choreographed movie about people using bladed weapons on each other.
Back home, I got eight hours of sleep, but still felt tired when my alarm woke me at 06:00. My energy levels feel, if anything, lower than before, perhaps because of the cumulative effects of the chemotherapy or perhaps because my daily steroid dose has been cut from eight milligrams to two milligrams.
I got the 07:15 ferry from Devonport to Auckland then the 07:35 bus (NZ $1.30) to Auckland Hospital (a ten-minute ride) where I had an 08:30 appointment at the haematology department's daystay section for a lumbar puncture.
On schedule, I saw the Very Efficient Person who had already given me two extremely expert lumbar punctures on previous occasions. As usual, instead of having me lie down on my side and curl up on the edge of the bed she had me sit on the edge of the bed, lean forward and place my head on a pillow, the pillow resting on a table. From the other side of the bed she then inserted the needle, without bothering with local anesthetic.
As on other occasions, this effort of hers went very well, and means that I have now had a total of six injections of the chemotherapy agent Ara-C by lumbar puncture. I'm not sure if there will be any more -- that's something I will try to clarify when I meet with an oncologist (possibly Dr. Porter) on Monday.
After the lumbar puncture I stayed lying on my back until 10:00, at which point I wandered over to the eye clinic, where I had a 10:00 appointment. The intraocular pressure in my eyes was checked and both eyes turned out to be fine.
I had lunch (I'd brought along some sandwiches) and then kept a second appointment for more eye checks at 13:00. Dr. Von Lany was puzzled to find some scarring in my right eye apparently caused by a laser. At Auckland Hospital they haven't used any lasers on me, but one was used in Japan for some purpose, I think to try to map the geography of the right eye. (In Japan, the attempt at what I assume to have been mapping by laser was abandoned because there was so much junk in the eye, and ultrasound was resorted to instead.)
I gathered that there was more than one crack (or chasm, or whatever -- something less than perfect, in any case) in the left eye in the aftermath of January's vitrectomy, and Dr. Von Lany asked Dr. Mantell if she should "go round it" with a laser, but he didn't think that was necessary.
I've been using the opthalmic steroid Timolol Maleate twice daily in the right eye for the last couple of months. This may be what has normalized the intraocular pressure in the right eye. The plan now is to discontinue the drug and review the eye in six weeks to see if the pressure stays down.
Apparently there was a lot less junk in the right eye this time, and Dr. Mantell indicated that he was pleased with the way my eyes are going. Looking ahead into the future, one unknown is how my eyesight will fare when the radiotherapy gets done, the present plan calling for radiation to be used on the back of (I think) both eyes.
Today, then, was dominated by medical matters. Another warm autumn day, the temperature currently 24 degrees Celsius inside the house, pretty well ideal.
My own temperature is sitting at 37.1 degrees Celsius. Yesterday, at the same hour, it had crept up to 38.1, which is taking us into "sound the alarm" territory, but I mutinously decided that I wasn't going to tell anyone anything. The very last thing I wanted was to end up getting ordered back to hospital.
A gamble I survived, it seems.
(Technically, as the Immunologically Compromised Man, I'm supposed to be on the phone to the hospital if my temperature hits 38 degrees Celsius, to get instructions.)
Yesterday I was feeling significantly depressed, and definitely in no mood for hospital trips. Today my mood was normal, but, as indicated above, I have been conscious of feeling physically fatigued.
The text on this page is part of the cancer memoir "Cancer Patient" which has been posted online. All the chapters of this book are on this website and can be read for free online. However, the text is copyright - all rights reserved. For permission to use this text or any portion of it contact Hugh Cook.
This personal memoir of the writer's encounter with cancer (non-Hodgkin's lymphoma of the large B-cell type) attempts to cleave to the truth. However, the text may contain information that is wrong, outdated, incomplete or otherwise misleading.
This memoir has been written in a time of illness by a cancer patient who, though he feels sharp enough, must admit to sometimes misinterpreting things, forgetting things, or, on occasion, quite simply not hearing things.
This memoir is designed to communicate the writer's personal experience and is not intended as a source of medical information. Got a medical question? Ask your doctor.