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 routine life as a cancer patient continues. He writes about internal bleeding, a side effect of dexamethasone. The author undergoes yet another lumbar puncture, this time at the hands of a Very Efficient Person. It hurts. The author writes about getting a new computer and thinks ahead to the future, and to the possibility of having a vitrectomy (a jelly-removal operation) on the right eye, which has been messed up by cancer.
* * *
Thursday 24 March 2005.
On Monday I was told to drop my daily intake of dexamethasone from eight milligrams to four, and cutting the dose in half like that made it possible for me to sleep again. For hours at a time, I mean, as opposed to getting in just an hour or two of survival sleep on an "I absolutely must have this or die" basis.
When I saw Dr. Porter today, at a meeting at Auckland Hospital which started at 10:00 and was attended by my parents, he told me to the cut dose in half again, down to two milligrams. He gave me a prescription for one-milligram tablets, which I later filled, and from now on I'll be taking one after breakfast and one after lunch.
Dr. Porter told me that my body is handling the chemotherapy well. But is the chemotherapy killing the cancer? He's going to schedule another magnetic resonance imaging scan (MRI) sometime to find out. I thought cytology results on samples extracted at lumbar puncture time would be giving us the answers on the progress front, but it seems we need the MRI.
My optimistic confidence is that, yes, the treatment is working. However, at this stage all I have is my confident opinion, unsupported by any evidence.
After seeing Dr. Porter I attended the haematology department for a lumbar puncture. After I'd waited for a while, a Very Efficient Person stabbed a needle between two of the bones of my spine without benefit of local anesthetic.
"It hurts!" I said.
"It has to hurt," she said.
My mother, watching, told me later she was impressed with the woman's skill and elan. The woman (a female doctor) did not have me lying on my side. Rather, to get my back to arch, she positioned me so I was lying forwards, my weight being taken by a table in front of me. That put the necessary curve into my spine.
Very expertly done by the doctor: that was my mother's opinion. My mother, who, as a nurse, spent a substantial part of her career working as a midwife, saw plenty of epidurals, procedures in which anesthetic was introduced into the spinal column during childbirth to reduce the pain. So she had a basis for judgment. My father, who opted to sit behind a curtain rather than watch me getting stabbed, did not venture his own opinion on the procedure.
Later, my mother asked if I'd noticed that the doctor was very well made-up and had a very expensive haircut, but I hadn't. What had registered was her confidence and a degree of what can only be called bossiness.
Fine by me. If someone's giving you a lumbar puncture, competence is everything, and this lady doctor sure was the ultimate in competence.
Assuming that I've remembered the figures correctly, which perhaps I have and perhaps I haven't, the procedure involved withdrawing sixty milligrams of fluid from my theca and putting in a dose of the Ara C chemotherapy drug. It went very quickly, and I was persuaded that I was in good hands, but I was annoyed at being made to lie on my back for two hours afterwards in case I developed a headache. I spent some of the time sleeping.
Afterwards, my parents dropped me off in Queen Street, and I did some shopping and burnt a CD at an Internet cafe. I came home on the ferry and walked home in the rain. Once home, I installed some software that I'd burnt onto the CD.
One item I installed today can make mp3 tracks out of CD tracks. This piece of software is very fast. I don't have what I regard as a satisfactory mp3 player here in New Zealand, but I have one in Japan, and I can make do, for the moment, with the Windows Media Player.
Another item I installed was the recently released Google Desktop Search, which I got from desktop.google.com and which has now indexed my hard drive so I can do keyword searches on the contents using, for example, "methotrexate" (currently three references identifying three files) or "Japan" (currently "about" 7,546 references).
This looks like a very good answer to those occasional "where did I put that?" questions that I have.
At this stage, I can say that the new computer, which was waiting for me when I came out of hospital on Monday 21 March, has now been set up properly, and I am working productively on it. Mostly I'm working with my trusty text editor, UltraEdit, of which of course I am a registered user.
All in all, today I had a long, busy day, including a couple of phone calls, one from brother Charles and the other from sister Catherine, and a letter from my wife in Japan, the letter updating me about the return of wife and baby to Japan.
Oh, one more thing: when I checked my e-mail today I found an e-mail from the Dunmore Press granting me a reversion of rights for my first novel, PLAGUE SUMMER, which I'm now free to put online or whatever. A nice happy event to round out the day.
* * *
Friday 25 March 2005.
Put in a fairly solid day's work on the computer today, admittedly with a couple of hours out for sleep before lunch. Focused on inputting the METASTASIS text into the computer -- I had it in handwritten form, since I was using a notebook when I wrote it -- and on updating the blog. It really tired me out. The Google Desktop Search program that I installed yesterday is seamlessly updating itself, and had already indexed all the just-input-now METASTASIS stuff by the time I thought to check. A very nice addition to my computing world!
* * *
Saturday 26 March 2005.
It is now roughly three months since my cancer was diagnosed, and here's my assessment at the three-month stage.
Psychologically, I've worked my way through the initial mental tumult, and things have settled down into a routine.
Physically, I'm doing okay. My energy levels are a bit low and my voice is a bit hoarse (the hoarseness possibly a consequence of chemotherapy.) I'm also showing the signs of three months of steroid use: eight milligrams of dexamethasone daily (recently tapered off to two milligrams daily).
Thanks to the steroid use, my face is puffy, I have unprovoked nose bleeds and my thigh muscles are a bit weaker than they should be. However, now that the dose has been reduced, I'm no longer suffering so grievously from insomnia.
My weight, which dropped to about 62 kilograms (about 137 pounds), has recovered to about 69 kilograms (about 152 pounds), some of this making a soft inelegant pot belly. Before I started losing weight I was about 75 kilograms (about 165 pounds).
In retrospect, it's the steroid, dexamethasone, which has dominated my medical experience for these three months, pushing me out to my mental boundaries in an uncomfortable way (often leaving me strung out, sleepless, intensely irritable) and physically changing (damaging) my body.
I can't complain, since the dexamethasone, in only a few days, very efficiently reversed the partial paralysis of the left side of the body that I started to experience back in December. By reducing swelling in my brain and by subsequently keeping the swelling at bay, the dexamethasone gave me back control over my own body.
Back in December my left eye was almost blind, presumably because of damage to the optic nerve caused by swelling in the brain. The left eye has now recovered sufficiently to read newspaper headlines. It gives me a blurred vision of the world sufficient for me to navigate round the house (that is, I could navigate round the house using just the left eye, if I really had to.) The left eye may possibly improve further, though I have no guarantee of this.
In the right eye I'm using an ophthalmic steroid called Timolol Maleate, one drop twice a day, this to treat raised intraocular pressure: glaucoma, possibly caused by poor drainage, and possibly permanent.
The right eye is internally messed up by dead garbage which drifts across the field of vision, and my ophthalmologist is talking about doing a vitrectomy once I'm through with chemotherapy and radiotherapy: surgically remove the jelly of the eye and replace it with fluid, thus getting rid of the dead cells currently cluttering up the field of vision.
The downside is that a vitrectomy can have serious side effects. But because I've already undergone a successful vitrectomy of the left eye (to get a sample of cells for a biopsy) the thought of this operation is not as scary as it would otherwise be.
All going well, I will come out of this with at least one fully functional eye. The problem with the raised intraocular pressure may or may not end up getting fixed. If it ends up proving permanent then I'll just have to live with it: them's the breaks.
Overall, looking back on the first three months since my diagnosis, my main thought is surprise. Three months! A quarter of a year! Where did the time go? And what do I have to show for it? Well, quite a few poems, to start with. Some finished. Others, like a poem I'm writing on the subject of constipation, still in progress.
Although I've been working on my constipation poem today, I've actually been suffering from diarrhoea. So, conscious of the fact that I'm immunologically compromised, thanks to the steroids and the chemotherapy, I've been taking my temperature every few hours. Usually I just take my temperature twice a day, once in the morning and once in the evening.
So far so good. My temperature is normal, so attribute the diarrhoea just to the fact that I've been eating so much fruit.
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.