Autobiographical medical memoir: full text of a non-fiction account of an encounter with brain cancer in the form of CNS lymphoma, a cancer of the brain and spinal cord. In the author's case, non-Hodgkin's lymphoma of the large B-cell variety. Text deals with intial problems, diagnosis, treatment with chemotherapy and radiation therapy, and the achievement of remission. (CNS lymphoma denotes lymphoma fo the central nervous system, the brain and the spinal cord.)
by Hugh Cook
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Advice for Cancer Patients
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Foreword - contains an indication of what the book is about and a heartfelt dedication.
Chapter One: In April 2003 eyesight problems begin while the author is living in Japan. These eyesight problems (which ultimately prove to be due to cancer) are initially misdiagnosed as cataracts.
Chapter Two: Initial tests fail to find a cause for the author's eyesight problem. An ophthalmologist tells the author he does not in fact have a problem. The author gets progressive lenses and adjusts to them well, despite initial problems. The author's eyesight recovers.
Chapter Three: The vision in the author's right eye collapses suddenly. Having completely lost faith in Japanese medicine, he initially does nothing.
Chapter Four: The author sees an ophthalmologist in New Zealand, is told that he needs to have some tests, and that he needs to be under the care of an ophthalmologist.
Chapter Five: Back in Japan, the author does some online research into, amongst other things, sarcoidosis, a degenerative disease which can cause both weight loss and blurred vision. The author lines up an appointment with a Japanese ophthalmologist, Dr. Lux.
Chapter Six: 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.
Chapter Seven: While waiting for the birth of his daughter, an event which fails to happen on schedule, the author meditates about cancer and his possible death in a slightly desolated landscape reminiscent of some of the science fiction environments imagined into life by the British SF writer J.G. Ballard.
Chapter Eight: The author attends a Japanese hospital as a patient for the first time in his life and tests his Japanese-language skills in a hospital environment. Japanese medical science tries to crack the conundrum of the author's medical condition but arrives at no quick answers.
Chapter Nine: The author witnesses the birth of his daughter in a provincial Japanese hospital and sees for himself what can happen when institutional priorities are allowed to outweigh patient needs. This is the birth from hell, grotesquely mismanaged by the hospital. Surprisingly, both wife and baby survive.
Chapter Ten: Back in Tokyo, investigations into the author's medical condition continue. The author undergoes an MRI scan aimed at determining whether he has brain cancer. The answer, according to the brain scan, is no. But it is alleged that, on the day of the scan, the author had sinusitis.Back in Tokyo, investigations into the author's medical condition continue. The author undergoes an MRI scan aimed at determining whether he has brain cancer. The answer, according to the brain scan, is no. But it is alleged that, on the day of the scan, the author had sinusitis.
Chapter Eleven: The author hits a language problem while undergoing a CT scan in Japan. The scan finds an ominous lymph node near the aorta. The author has to undergo a second CT scan, this time with iodine injected intravenously to provide contrast. The upside of the iodine injection is that it supplies extra clarity. The downside is that it has a number of potential side effects, one of which is death. Surprisingly, the informed consent procedure skips over the death bit. On account of another procedure, a gallium count, the author becomes radioactive for a few days, but does not glow in the dark.
Chapter Twelve: The author has a needle stuck in his right eye. a procedure which is not as uncomfortable as one might imagine. The needle does not go into the eyeball itself. Rather, it is somehow stuck in alongside of the eyeball. The needle (or "blunt cannula" in the words of Dr. Lux) is used to inject steroids, which produce a (possibly temporary) improvement in eyesight. Later, the same procedure is attempted on the left eye but is messed up by Ms. Josama. This naturally has the effect of making the author wary of letting people of unknown capability use his eyes to practice the art of eye surgery.
Chapter Thirteen: While the author's eyesight problems continue, he does his best to grapple with the stress and pressures of life in the Tokyo-Yokohama area. He begins to prepare for a Christmas trip to New Zealand, the plan being to have a short Christmas holiday in New Zealand with wife and baby.
Chapter Fourteen: The author has the experience of using the Japanese language as a medium for teaching English, and does so under difficult circumstances while struggling with eyesight difficulties. By this time the left eye is more or less useless and the right eye is struggling badly. The blindness of the left eye results in an accident: an unexpected collision with a human cannonball.
Chapter Fifteen: The author prepares for a trip out of Japan by making a fact sheet detailing tests he has had and medications he is taking. The author arrives in New Zealand and sees a New Zealand ophthalmologist, Dr. Kiwi, who refers him to Dr. Mantell, an eye surgeon. Dr. Mantell discovers that the optic nerve in the left eye is damaged. The author's health then collapses abruptly as partial paralysis of the left side sets in. Things have entered the catastrophe stage.
Chapter Sixteen: In Auckland, New Zealand, the author sees, first, a family doctor, then a neurologist. Then the author undergoes an MRI scan. The diagnosis? Lymphoma. The author has cancer, definitely, unmistakably, of a certainty. The long siege of uncertainties is over. This is it. The challenge is here. Now to live or die, to survive or go under. One or the other.
Chapter Seventeen: Having been diagnosed with cancer, the author has to think a little about the associated issues of privacy, etiquette and timing. What do you disclose and to whom do you disclose it? The author confronts his survival chances: a forty percent chance of still being alive five years from now. And a sixty percent chance of being dead. The author undergoes a vitrectomy of the left eye, an operation to remove the jelly from inside the eye so the jelly can be analyzed for clues to the nature of the cancer.
Chapter Eighteen: Confronted with the possibility of dying, the author goes through a period of ceaseless mental activity, reviewing the present, the past and the future. He thinks back to, amongst other things, an occasion on which he had a brush with hypothermia while on military service. Now, faced with the active possibility of death, the author thinks about his life and concludes that he is satisfied: he has lived a good life.
Chapter Nineteen: Life as a cancer patient unfolds slowly with no quick rush to drama. The author goes to a bookshop and a coffee shop. The author has dinner out. The author has problems with the dexamethasone which he is taking to reduce the swelling in his brain, and realizes that he, the patient, failed to take in all that his doctors were saying to him.
Chapter Twenty: The author is admitted to hospital for brain surgery and finds that he is regarded as a potential carrier of an unkillable superbug, methicillin-resistant staphylococcus aureus. The author meets various people associated with his upcoming operation and constructs a fantasy about his eventual return to his former life in Japan. The fantasy requires, of course, that he survive.
Chapter Twenty-One: The author has an MRI scan to map his brain in preparation for brain surgery. He is then (eventually, after some waiting) taken into the operating theater for brain surgery.
Chapter Twenty-Two: The author goes under the general anesthetic and wakes up to find himself alive, the operation done. An uncomfortable night of interruptions follows. The author tries his best to understand what is going on around him but fails to figure out how his blood pressure gets magically displayed on the blood pressure monitor beside his bed. This, really, is a mystery, because the author is not wearing a blood pressure cuff. In due course the mystery is solved. Day, finally, arrives. The author's breakfast, however, does not. His paranoid suspicion that his breakfast has gone missing turns out to be true.
Chapter Twenty-Three: Recovering nicely from brain surgery, the author reconfigures his self-image, arriving at the notion of himself as a younger person. He also finds time to think back to a question which he never asked in Japan. The author also thinks about the death of his Aunt Joyce, who died of non-Hodgkin's lymphoma, and wonders about the possible implications of the "probably benign" lymph node (ten millimeters in diameter) which was found near his aorta by a CT scan in Japan.
Chapter Twenty-Four: Following brain surgery, the author continues to recover steadily. This chapter includes a series of mundane snapshots of hospital life, with nothing dramatic happening. After this siege of the unexciting, the author undergoes a CT scan, his second CT scan with injected iodine. Finally, his stay in hospital comes to an end. He is free to go.
Chapter Twenty-Five: In the aftermath of his brain operation, the author is advised by his mother to cover his Frankenstein scar if he goes out in public. The author attends a family dinner and, at that dinner, indulges himself in speech making. The author is calm, a rocket committed irrevocably to its trajectory, the arc of the journey impossible, now, to alter. The outcome entirely beyond the author's control.
Chapter Twenty-Six: The author, now awaiting treatment for lymphoma, keeps an appointment the oncology department at Auckland Hospital. There is a waiting list for chemotherapy. Perhaps the author has the chance of being accepted for an experimental chemotherapy trial. The author decides to give an enduring power of attorney to his sister in case upcoming treatment (chemotherapy and radiation therapy) renders him incapable of making decisions for himself.
Chapter Twenty-Seven: The author receives information about a clinical trial for which he is a possible candidate. He learns more (not a lot more, but something) about the danger of ending up with serious brain damage as a consequence of radiation therapy following on after chemotherapy. He decides that this is a lottery but that he is prepared to take his chances.
Chapter Twenty-Eight: Part of the author's experience as a cancer patient is that he is exiled from his familiar life in Japan. In New Zealand, he has a certain number of immigrant moments, including moments when he has trouble deciphering the New Zealand accent and a problem with an unfamiliar ATM machine.
Chapter Twenty-Nine: Since there is a waiting list for chemotherapy, the author waits. Life as a cancer patient involves, amongst other things, dinner at the golf course. The author's history as a golfer is described. The author is rejected for the clinical trial which he had hoped to join. The author is briefed on his upcoming chemotherapy.
Chapter Thirty: The author undergoes the first of six chemotherapy cycles. He is admitted to Auckland Hospital and spends seven days in a hospital bed, during which he loses track of time and misplaces two days. He survives physically, with very little in the way of nausea and vomiting, but collapses psychologically.
Chapter Thirty-One: The author assesses the chemotherapy process, in particular with reference to the question of literary productivity. The author writes about the relationship between cancer and creativity. In brief, there is none. Cancer does not impact on creativity.
Chapter Thirty-Two: The author writes about some of the weird places he went to in his head. The chapter includes the complete text of the short story "Lordargis", which is a bit on the bizarre side.
Chapter Thirty-Three: The author writes about the writing of the cancer story "Metastasis", a horror story. A horror fantasy story. On the medical front, the author suffers from internal bleeding. Serious or trivial? He is tired of being the cancer patient, the constant object of observation, and decides to ignore the bleeding.
Chapter Thirty-Four: This chapter contains the bull text of a horror story, a fantasy story, a cancer story called "Metastasis", the full text of which was first published on the Internet on Friday 25 March 2005 when it was posted on the web site zenvirus.com (which is also reachable by way of hughcook.com.) Some readers may find the content disturbing or offensive. Note that it is, as has been stated above, a horror story.
Chapter Thirty-Five: 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.
Chapter Thirty-Six: 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 in the previous year. 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.
Chapter Thirty-Seven: While undergoing medical treatment, the author continues to push ahead with his writing. Now well into chemotherapy, he is experiencing a degree of fatigue. Also, the occasional small problem with memory. He reads about memory loss in association with the aging process. Life is undramatic but the fear of the future is there in the background.
Chapter Thirty-Eight: In hospital for yet another chemotherapy cycle, the author endures hospital food. The author provides details of his chemotherapy protocol (that is, his chemotherapy treatment plan). This is the author's attempt to give a step-by-step breakdown of the chemotherapy process as he experienced it. However, this just is the author's personal experience, not an account of how chemotherapy is always done, and different patients could quite possibly experience different treatment regimes. The author writes not from a position of expertise but from a position of ignorance. The author supplies a chemotherapy poem.
Chapter Thirty-Nine: The author writes about his thoughts on radiotherapy, that is, on the risks of radiation therapy and his fears about the process. The author supplies a radiotherapy poem.
Chapter Forty: The author's latest chemotherapy session is aborted because his blood count is down. The author resists the suggestion that he should have a blood transfusion. The author attends the hematology department as a daypatient. The author's "battle with cancer" is mundane and undramatic, as when, for example, he eats raisins for extra iron. Having reduced his intake of the oral steroid dexamethasone, he finds his sense of taste returning to normal.
Chapter Forty-One: 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.
Chapter Forty-Two: The author eats chocolate for his health. He discovers, amidst the debris of old literary efforts, some creative writing about cancer, writing undertaken in the days before the writer became a cancer patient.
Chapter Forty-Three: In May of 2005 the author's fifth chemotherapy cycle (the fifth of six) gets underway in the hematology department at Auckland Hospital. In hospital, the author eats hospital food, including "Corned Beef & Mus". The author is never able to determine what "mus" might be. Even sitting there on the plate, "mus" remains a mystery. The author gets good news on the blood count front. The author discusses eyesight problems caused by cancer.
Chapter Forty-Four: The author writes about his experience with the oral steroid dexamethasone, about exercise and energy levels, and about the first steps in his upcoming radiation therapy treatment. The author writes about sickness in relation to thought processes and concludes, quite simply, that sickness makes you sick. End of story. Everyday life continues: the author registers to vote. The chapter concludes with a poem about being exiled from wife and baby, wife and baby being in Japan while the author is marooned in New Zealand by illness.
Chapter Forty-Five: The author's sixth and final chemotherapy cycle begins. Why does the man in the bed opposite have black eyes and other bruising? (Hint: it's not contagious.) While the author cruises through his final chemotherapy cycle, other patients are busy being seriously sick. The author contemplates the origins of modern chemotherapy in the world of chemical warfare and decides that chemotherapy is an imperfect treatment in an imperfect world, but it's the best we've got at this stage of human civilization.
Chapter Forty-Six: The author's sixth and final chemotherapy cycle ends. Radiation therapy still lies ahead. At this stage, the author still has most of his hair. The chapter concludes with two poems, one called SURVIVORHOOD, which is about surviving, and one called CELEBRATION, which is about being alive (and being glad of being alive).
Chapter Forty-Seven: In preparation for radiation therapy, a mold is made of the author's face. Mood? Disgruntled. Out of sorts. As treatment drags on, mood control has become an issue.
Chapter Forty-Eight: The author attends an orientation session in advance of radiation therapy. The text discusses the side effects of radiation. The author borrows a couple of books written by people who suffered cancer. The text touches on the subject of radiation-induced brain damage and the possibility of radiation-induced malignancy. The author gets his first appointment for radiation therapy.
Chapter Forty-Nine: The author has another magnetic resonance imaging scan. The author's life is in a holding pattern, his energy levels severely depleted following chemotherapy. The author researches the possible side effects of radiation to the brain and learns about something called radiation necrosis. Which can kill you. The fun never ends, does it? Meantime, daily life continues in the land of quilts and bell ropes.
Chapter Fifty: The results of the latest MRI scan: there is a hole in the author's brain some four millimeters in diameter and the author's brain has actually shrunk as a result of chemotherapy. The possible effects of radiation therapy on the brain are considered. The author reviews what is known about the (harmless, hopefully) lymph node near his heart.
Chapter Fifty-One: Evan Handler, author of the cancer memoir "Time on Fire", e-mails to say he's alive. For a cancer patient eager to survive, E.H.'s survival is good news. Author Hugh discusses his fantasies of food, partially gratified. The joys of fatherhood are mentioned, briefly. Radiation therapy starts tomorrow. The chapter concludes with a poem about noodles. The poem rather tends to suggest that the noodles are brain damaged.
Chapter Fifty-Two: The author begins radiation therapy. After a few days, there is a little nausea. Eating becomes difficult. A chapter heavy in poetry wraps up with a poem called CARCINOMA BLUES. In summary, as radiation therapy gets underway, the author finds it straightforward but not exactly a whole lot of fun.
Chapter Fifty-Three: A description of the radiation therapy process: being irradiated by the linear accelerator. A discussion (poorly informed, ignorance talking to itself) about the possibility of radiation necrosis.
Chapter Fifty-Four: The author has an eye check and is found to have cataracts in both eyes. After so much has happened, the diagnosis of cataracts pretty much falls into the "So what?" category. A poem, AFTER I WAS DIAGNOSED. More about the linear accelerator. The smell of radiation and the color of radiation. Thanks to the radiation therapy, fatigue has set in, and the author's forehead is red and angry. The author's thoughts turn to his daughter, living separately in Japan.
Chapter Fifty-Five: Radiation therapy continues. A certain amount of hair falls out. The author's wife, effectively without a husband for the moment, soldiers on in Japan, where baby Cornucopia is busy developing her willpower, the potential of which seems formidable. For the author, the sheer endlessness of treatment is becoming frustrating. Because of the radiation therapy, food is unattractive. It is a bit of a struggle finding something the stomach is happy to receive.
Chapter Fifty-Six: The cancer patient's life continues, long on days, short on drama. Dinner party. Vitrectomy canceled, to be rescheduled later. Life is flat enough for trivial problems to loom large, the prime example being mysterious (trivial) skin problems.
Chapter Fifty-Seven: Morning begins with what has become a daily ritual: combing out the hair which the scalp is discarding. Radiation therapy continues. The cancer patient meets with a cancer doctor and discusses his petechiae and the "woolly feeling" in his toes, this strange feeling being the consequence of nerve damage caused by chemotherapy. On the last day of radiation therapy, the author assesses both his physical condition and the experience of radiation therapy. In the case of this particular cancer patient, not too bad, really. The author discusses the long-term effects of radiation therapy, some permanent, some unpredictable. It is seemed he is destined to be a cancer patient for life.
Chapter Fifty-Eight: The cancer patient discusses the meaning of his encounter with cancer, and arrives at the conclusion that he achieved no karmic insights. But he did learn something from the experience. He learnt that he was his daughter's father. This is no small thing to learn.
Chapter Fifty-Nine: The author undergoes a transformation from a cancer patient into something entirely different.
Chapter Sixty: A confrontation with mortality. The author learns that there are no second chances. The cancer is in remission right now, but if it comes back then the probable outcome is death. This is both good news and bad news. Bad news, in that reality is fragile. The more probable outcome is death. Good news, in that we only have to do this once. The author receives a visit from his baby daughter, who then returns to Japan. The author intends to follow in December. Life is the living moment. Seize the day.
Chapter Sixty-One: And what a long strange trip it's been! What a saga! And what did I learn along the way? Well, in a practical sense, what I was doing a lot of the time was processing information, and I have a few practical hints which, I hope, may help someone, somewhere, with the tricky task of managing the information load that accompanies a diagnosis of cancer. Managing information is not the easiest thing to do when reality has fractured and a world of strangeness is pouring in through the cracks. Here, then, some practical hints for cancer patients, all focused on the topic of information management. Looking for advice? This is, really, the one and only chapter of the book which ventures to give any.
a medical memoir
by 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.
All materials on this website can be read for free online. However, note that the website contents are copyright © 1973-2006 Hugh Cook - all rights reserved. For permission to use any of the material on this website contact Hugh Cook.