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.
Dr. Lux tells the author that there are two main branches of probability. First, that some kind of inflammatory condition is causing the problems in the right eye. Second, that the problems are being caused by cancer. It is agreed that the author will attend the Japanese hospital where Dr. Lux works so medical investigations can be carried out. The author fears that at some point someone will demand that one of his eyes be cut out.
2004 March 23 Tuesday.
* * *
In retrospect (looking back at early 2004 from the perspective of 2005) this diary entry does not really capture the extent of my shock at being told that cancer was a possibility. Dr. Lux did not initially use the word "cancer". Rather, she used the word "tumor". But, when I put it to her that we were talking about the possibility of cancer, she agreed that we were.
I later ended up in an adversarial relationship with Dr. Lux, and our doctor-patient relationship pretty much collapsed when we finally reached an impasse when she wanted to proceed with a biopsy of my right eye, a procedure which I was not prepared to countenance.
However, to give Dr. Lux her due, she saw right from the start what the two main branches of possibility were. My eye condition might be the result of some kind of inflammatory condition, as Dr. Kiwi had suspected. Alternatively, it might be the result of cancer. Specifically, the result of lymphoma.
My Internet explorations accelerated, and I found myself getting more and more lost amidst the bewildering array of options. I found myself reading, for example, about Whipple's Disease, caused by the bacterium tropheryma whippelii. Time and again, my researches came to an end not because the Internet had run out of suspects but because I had run out of time, or had reached a stage of exhaustion.
* * *
2004 March 23 Tuesday.
The question is how far I go with this. The possibilities are (a) lymphoma cells or (b) inflamed cells. If (b) then the possibilities are (b1) an identifiable cause (such as a parasite infection) or (b2) no identifiable cause. If (b2) then Dr. Lux is speaking of steroid injections to try to clear up the problem.
I can see the point of having the MRI to look for brain cancer, since the eye trouble in conjunction with the (possibly coincidental) weight loss is a bad news combination. I can also see the point of a parasite hunt, since I traveled in India, Nepal and Burma in 1989, and got really sick.
That far down the road we can go. If lymphoma, then I deal with that when I'm presented with that diagnosis. However. It's not clear to me that a steroid injection will necessarily help (b2).
Part of the reason for the steroid injection is to help with differential diagnosis -- if the eye condition doesn't respond to steroids then maybe it's cancer. And is it cancer? Well, maybe. But, then again, maybe not.
After we've done the MRI and the parasite hunt and the blood tests then we've exhausted the zero risk options. At that stage I'm thinking maybe it's better just to live with this rather than undergo some kind of surgical operation which puts my eyesight at risk. The reason for a "let's just live with it" approach is that the data I'm looking at does suggest that the ophthalmologist I saw in New Zealand was correct in saying that often there's no known cause and no known cure.
So that's my decision, then.
We do the MRI ("magnetic resonance imaging scan") and the blood tests, and see what turns up. If nothing turns up then at that stage I say "hold fire" and ... wait, I think.
* * *
In retrospect (looking back at early 2004 from the perspective of 2005) it is clear that very early in the piece I had set myself on a collision course with Dr. Lux.
Dr. Lux had already indicated to me that if initial investigations failed to find a cause for my eye problem then it would be natural to proceed with a biopsy: a surgical operation aimed at obtaining a tissue sample for analysis.
I did not see a biopsy as a "zero risk option" and, right from the start, I was determined to avoid any operation unless such an operation proved to be absolutely necessary. I found it all too easy to imagine myself ending up damaged, blinded or dead.
The fact that Dr. Lux was very sanguine about the prospect of an operation did not reassure me at all. I got the impression that she was far too casual about it and was soft-pedalling the risks.
Additionally, we did not properly discuss the nature of a vitrectomy right at the start, so I got the impression that a biopsy, if it took place, would mean taking a small sample for examination under a microscope. Consequently, much later in the piece, when I learnt from Dr. Lux that they would aim to remove as much of the jelly as possible -- apparently jelly left in the eye shrinks -- I got a big shock because of the discrepancy between what was actually proposed and the image of the operation that I had built up right on the start on the basis of inadequate information.
* * *
2004 March 24.
Health. Can read fine print with right eye but usual problems of haziness/floaters. Very conscious of the taste of my muesli -- not much appetite for it. Bowel motion loose -- tends to be loose, which I've always attributed to a high fluid intake and a reasonably high fiber diet, but apparently this can also be associated with some kind of parasite infection. Feel flat in the morning, as always.
Felt calm in the day. Went to sleep on the train and almost immediately suffered a nightmarish image of my own eviscerated eyeball, red and raw and hollow, which woke me up in a hurry. The text string "sentence of death" went through my mind at one stage of the day. But, overall, I'm functioning okay.
* * *
In retrospect (looking back at early 2004 from the perspective of 2005) it is clear that I was suffering unduly from fear and ignorance. At this early stage, I had already decided (without consulting the statistics) that a diagnosis of cancer, which was one of the possibilities which was on the table, would amount to a sentence of death.
I was also worried that at some stage someone was going to demand to cut out my eye, although from what I read later on the Internet (and this, I must stress, is something I only read once, on one web page, a page which was no necessarily perfectly informed) it seems that surgical removal of the eye is not a standard response to cancer for the simple reason that it is generally pointless. Supposing the cancer to have originated in the eye (something which is possible, though very rare) it would probably have moved to other parts of the body by the time it was discovered, requiring treatment by chemotherapy or radiotherapy or by a combination of both.
Later in my treatment it was decided that the cancer had in fact gotten into the eyes and that there was a danger that the eyes might constitute a sanctuary site for the cancer, somewhere the cancer could survive despite chemotherapy. For that reason, my radiation oncologist arranged for radiation to be beamed into the backs of my eyes, grazing the backs of the lenses, guaranteeing cataracts in the long term but killing the cancer.
Nobody at any point suggested cutting out either of my eyes, but it was one of my early nightmares that at some stage they would.
* * *
2004 March 25 Thursday.
Yesterday the word "lymphoma" was running through my mind, and this morning I was lying awake at about 0300 when I suddenly thought "Whoops!" -- Auntie Joyce died of Hodgkin's Disease. I can't remember whether I told Dr. Steadybrick that when I saw him last year, or whether it totally slipped my mind.
A quote from the Internet:-
"Hodgkin's Lymphoma or Hodgkin's Disease is a malignant (cancerous) growth of cells in the lymph system".
Searched for "Hodgkin's disease vitritis" and got fifty-six hits, some for "non-Hodgkin's lymphoma".
One more thing to think about.
Ran my hand over my belly this morning and it was pretty much washboard-flat, not really a gram of fat. According to our underestimating bathroom scales, I weigh sixty-four kilos. I've woken with no appetite, but I don't really know if the reason for that is my daily metabolic cycle, or my mood, or something more sinister.
Today I'm home alone, and my schedule calls for me to write my monthly reports and do my pay sheet and stuff like that. So, a busy day.
I've got to take things one day at a time, push ahead and see what happens.
Today, with the possibility of my own death in mind, I went online and paid for my web site through to May of 2006. This actually makes me cry. It's the first practical step I've taken with my own death in mind. A more positive way to look at it, though, would be to say that the message is "let's clear the decks so we can fight the good fight."
Of course I'm not unaware of the massive irony involved here, dealing with this "do I have a fatal disease?" stuff just before my child is born. This is the kind of crass melodramatic situation which belongs in soap operas. The wife is heavily pregnant, the child is about to be born, and the husband is told that he may have a potentially fatal disease. But it was happening to me for real.
And I did not interpret the possibility of lymphoma as being the possibility of a disease which might perhaps kill me. I interpreted it as being the possibility of a disease which, if it had invaded my body, most definitely would kill me. For me, cancer equaled death.
Looking back at my diary entry for March 25th, I'm surprised that it had taken me so long to remember that my Aunt Joyce had died of cancer -- not from Hodgkin's disease but, as it happens, from non-Hodgkin's lymphoma.
What I later read is that non-Hodgkin's lymphoma is not hereditary, so the fact that I came down with the same disease as my aunt would seem to be pure coincidence. However, what registered with me at the time was the simple fact: My aunt died of this.
It seemed reasonable to me to presume that if I had lymphoma (and Dr. Lux had told me that this was a possibility) then I might quite possibly die too. In fact, I would die. That was the message of my family history to me.
That was the kind of thing that was going through my head as date of my baby's birth drew near.
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.