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 has blood tests, reads about brain surgery, confronts a bone marrow issue and discovers a new excuse for eating more chocolate. The author looks ahead to radiation therapy and starts anticipating that his medical story may have a happy ending.
* * *
Sunday 24 April 2005.
This morning, over breakfast, I was sampling Ian McEwan's recent novel "Saturday" (Jonathan Cape, 2005), which my mother has borrowed from the library. The viewpoint protagonist is a brain surgeon called Henry Perowne, and the novel contains a seam of what is evidently massively researched brain surgery material.
Having personally undergone brain surgery earlier this year, I found the brain surgery content very interesting, particularly the account of a surgical foray into the region of the pituitary gland (on pages 43-45).
"To go in right through the face, remove the tumour through the nose, to deliver the patient back into her life, without pain or infection, with her vision restored was a miracle of human ingenuity. Almost a century of failure and partial success lay behind this one procedure, of other routes tried and rejected, and decades of fresh invention to make it possible, including the microscope and fibre optic lighting."
That certainly resonates with my impression of the historical progress of the medical enterprise as being one involving a certain amount of trial and error, of "failure and partial success" -- a certain amount of "gee, that didn't work" roulette mixed in with the science.
However, McEwan's brain surgeon hero seems to be working in a world in which the science has straightened everything out into a set of highly evolved procedures which the maestro can apply with a sure confidence of the results.
That may be true of brain surgery, up to a point, but my own take on oncology, the discipline with which my own life is currently interacting, is that we're still in the pioneering stage, a long way yet from a universe of stainless steel certainties. Not that I'm complaining: this is simply the consequence of living in the year 2005 rather than 2775.
* * *
Wednesday 27 April 2005.
This morning I fronted up to what we might call the Kingdom of Blood, the hematology department at Auckland Hospital, where I have been receiving chemotherapy treatment (hematology having taken on a number of oncology patients to downsize a waiting list).
I had blood drawn for blood tests then sat around for an hour, drinking tea and reading magazines, until the results came back. Then a doctor sat down with me to discuss the results.
At issue was whether I would be admitted to hospital tomorrow Thursday for Cycle Five of my chemotherapy treatment, which is planned to run for a total of six cycles. The answer: no. Not tomorrow, but Monday. My bone marrow seems to be doing fairly well but would still benefit from a few more days in which to continue its recovery undisturbed by the impact of chemical warfare.
The problem is that if the bone marrow has been hit hard by the chemotherapy agent methotrexate, and if the body is prematurely poisoned by yet another dose of methotrexate, before a proper recovery has been made, then the result may well be that the body ends up with a long term problem when it comes to manufacturing blood. Consequently, a degree of caution is in order.
In my own case, it seems that things are going reasonably well. My hemoglobin level, which at one point last week was down to 87, was up at 105 today (versus a norm for a man of 120). So the trend is positive: the bone marrow is doing its stuff and is turning out the necessary red blood cells.
However, it seems there is one test labeled "MCV" which signals a need for caution. My understanding of this test (an understanding which is approximate, and may well be flawed, as I may have misconstrued what I was told) is that the MCV test measures the degree to which immature blood cells are released from the bone marrow.
Apparently a normal MCV level would be 97, but mine is elevated, at 107. This means (if I've properly understood what I think I've been told) that the proportion of blood cells being sent forth from the bone marrow while they are still immature is unusually high. In an ideal world, the immature blood cells would linger in the bone marrow a little longer to mature, and the fact that they are being sent forth indicates that the bone marrow is under stress.
However, the doctor thinks that I will be fine to start chemotherapy on Monday. I will, in any case, have more blood tests on Monday, to check how things are going.
Another test which was discussed today was something called the RETIC count. The results of that particular count were not back when I had my consultation with the doctor (if that test or some other test were to radically change my situation then I'd get a phone call), but it seems that it's a count of young red blood cells, and indicates how well the bone marrow is working.
Anyway, by the time I exited the hematology department, returning to the day outside -- an autumn day, windy, a bit cold, but very sunny -- I was feeling pretty good. The trend shown by the blood tests looked good and I felt suitably informed. (Very well informed. In fact, to be honest, when we start skating along the edges of technicalities like MCV, at moments I start to feel a little over-informed.)
While I was at the hematology department a number of people greeted me by name. I've become a known face. The nice thing about cancer is that it's a convivial disease, good for building up human relationships. Nothing moves at the speed of an emergency room drama. Instead, your cancer evolves over days, weeks, months, so you get to know a certain number of people in the system, at least at the smiling hello level.
I was diagnosed with non-Hodgkin's lymphoma of the central nervous system back in December, so by this time I've been in cancer patient mode for about a quarter of a year.
For the first three months, my brain was in hyperdrive, my mind incessantly alive with thoughts of the past, the present and the future. This ongoing thought-churning process was probably driven by two things: first, the ongoing impact of the initial shock, and, second, the influence of a reasonably high dose (eight milligrams a day) of the steroid dexamethasone.
Now, with my steroid dose cut to two milligrams a day, and with my mental adjustments mostly made, my life has settled into a routine. I'm conscious of the fact that, physically, I'm certainly not one hundred percent. There are limits to both my mental and physical stamina, and if I don't respect those limits then I hit a wall.
One more thing on the physical side: I'm still having ongoing eyesight problems, though these are manageable.
Additionally, at times I drop things or spill things, which seems to indicate a slight degree of physical clumsiness. I'm fine as long as I'm firmly focused on the task at hand, but if my mind wanders then accidents are liable to happen.
The most serious incident was a couple of days ago when I had a saucepan full of boiling noodles on a hotplate. I reached for it incautiously, without really thinking what I was doing, and managed to skew it off the hot plate. It almost but not quite overturned. If it had overturned, I would have ended up with boiling water sluicing down my leg. I filed that away for future reference: special care needed when cooking.
On top of that, I'm still having ongoing eyesight problems, though these are manageable.
And that, really, is the height of the drama of my invalid's life: the pot which did not overturn.
The rest of it is pretty tame. "My battle with cancer" amounts to a series of very small acts, like, for example, being sure to brush my teeth (the Immunologically Compromised Man should practice good oral hygiene) and eating raisins for extra iron.
Today I got a phone call from a family member who had seen something in a health pamphlet about another food that I might consider eating: chocolate. What's alleged is that the pamphlet said that eating cocoa (a constituent of chocolate) had proved to reduce the side effects of chemotherapy. But what side effects for what chemotherapy I have no idea. Apparently the active agent, the thing in cocoa which does the good work, is something called ferulic acid.
I don't know if this information is correct or not. And, even if it is correct, I don't know if it applies to my own chemotherapy regime, but, even in the absence of certainty, it sounds like a good excuse for eating more chocolate.
A countervailing factor, however -- something that tells me that now is not the time to pig out on chocolate -- is that my weight has gone up to 74.9 kilograms. Admittedly, I was fully clothed when I weighed myself today. Even so, that's pushing right up against my lifetime high of 75 kilograms.
On the one hand, I'm reassured by the fact that I've put on weight. Back in December, I was down to 62 kilograms, and the thought "weight loss equals death" was running through my mind. On the other hand, I don't really want to put on more weight than I already have, particularly as the weight seems to be accumulating on my belly.
So: no snacking!
Overall, at this stage I'm feeling relaxed and optimistic at the way things are going. Although I'm not physically one hundred percent, I feel okay, both physically and mentally, as long as I work within my limits and don't try to push things.
My body has generally coped fairly well with the experience of being poisoned by high doses of methotrexate, the number one drug in my chemotherapy regime, which has featured three drugs in all: methotrexate and vincristine, both administered intravenously, and Ara-C, administered via lumbar puncture.
And, having been through four complete chemotherapy cycles, I'm familiar with the procedure, and so I feel reasonably relaxed about the two remaining cycles, particularly since there are no more lumbar punctures scheduled.
So far, then, so good.
At the outset, the likelihood that I would still be alive in five years was, statistically, forty percent. That, apparently, is the five-year survival rate for non-Hodgkin's lymphoma, a statistic that I learnt because I specifically asked for it. However, from the beginning, the doctor in charge of my case told me he was working for a cure. And, at this stage, things seeming to have gone pretty well, I'm not seriously expecting to die.
My biggest worry at the moment is the radiation therapy which is scheduled to follow chemotherapy, and what damage that might result in. That (to start with the trivial) is when I can reasonably expect to lose the rest of my hair. (At the moment I still have hair, but it's a bit thin, a certain amount of it having combed out.)
However, if I can make it through the radiotherapy without ending up in cognitive deficit territory (and, statistically, my chances of doing that look reasonably good) then this medical adventure is quite possibly going to end up with something which could be described as a happy ending.
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.