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cancer patient's blog |
by Hugh Cook |
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a glimpse of Hugh Cook's experience, poetry, thinking - chemotherapy and radiotherapy - a patient's personal experience • Hugh's chemotherapy protocol (treatment plan) • chemotherapy poem • Hugh's thoughts on radiotherapy (risk analysis, fears) • radiotherapy poem • Hugh's chemotherapy aborted temporarily because blood count down |
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Section 139 Entry 0001. Date: 2005 April 15 Friday.
(diary) (previous) (top) (bottom) (next) (topics) (contents) Content of this April 15 2005 blog entry: a glimpse of Hugh Cook's cancer patient experience, poetry, thinking - chemotherapy and radiotherapy - a patient's personal experience • Hugh's chemotherapy protocol (treatment plan) • chemotherapy poem • Hugh's thoughts on radiotherapy (risk analysis, fears) • radiotherapy poem • Hugh's chemotherapy aborted temporarily because blood count down * * * Yesterday morning I was in the shower when Auckland Hospital called to tell me to come in for my fifth cycle of chemotherapy at 11:00 rather than 10:00. I did so, arriving tired and scratchy, expecting that I would start receiving intravenous fluids as twelve noon as usual. But, no, the start time for IV fluid had been delayed until 18:00. I was able to order the lamb casserole for dinner, but what turned up instead was the cheesy bake, a disgusting mess of congealed stuff that I deemed inedible. I supplemented my evening meal with my own food: an apple, an orange, some seaweed crackers and some scroggin (a mix of nuts, raisins, pumpkin seeds and the like.) Putting in a needle for an IV line usually goes smoothly, but on this occasion to get the lure (as they call it) in place took three different medical professionals (two nurses then one doctor, all women) and five needles. After that bumpy start, however, I went off to sleep solidly and magnificently, which made up for it. At this point I'm going to outline my protocol: the standard treatment plan for my five-day chemotherapy cycles. Hugh's Protocol (Chemotherapy Treatment Plan) (the pattern followed for chemo cycles 1 through 4) B. For the last six of those eighteen hours, sodium bicarbonate to move the pH of the urine in an alkaline direction; during this period the patient urinates into a plastic jug so the output can be measured and dipsticked to see if the pH is the desired eight or more. Stages A and B are to protect the body from the impact of the coming methotrexate. C. With IV sodium bicarbonate still up and running, IV methotrexate (a chemotherapy agent) runs for four hours. The methotrexate looks (to me) like a filthy bag of yellowish brown garbage. For the four hours while it's up and running, I try to sleep, or focus on something like reading a book, so I don't think about it. D. Following the methotrexate, a syringe of the chemotherapy agent vincristine is injected into a port in the IV line: administering this second chemotherapy agent takes close to zero time. E. For twenty hours, IV fluids: one a bag of fluid containing both potassium chloride and sodium chloride (as used before) and the other a bottle containing sodium bicarbonate (again, as used before.) F. After twenty hours of IV fluids (that is, twenty-four hours after the time when the four-hour infusion of methotrexate was started) folinic acid rescue starts. The IV fluids of step E continue to run. Folinic acid injections are given into a port in an IV line every six hours to neutralize the methotrexate. When blood tests show that the methotrexate level has dropped right down, the treatment is over. On my previous chemotherapy cycles (cycles one through four), there have been, I think, eight folinic acid injections at six-hourly intervals. The methotrexate, which was introduced into the body to kill cancer cells, has to be neutralized otherwise it will proceed to do serious damage to the patient, including liver damage. In short, first they poison you then they give you the antidote, and, all going well, the cancer suffers more than you do. In my case, in practice the theory has been working out pretty well. A rather primitive way of doing business, really, but I'm stuck here in 2005 and can't time machine my way forward to the exquisitely engineered cancer-specific drugs of the far future. In addition to steps A to E, at a certain point I get medicines in tablet form, the antiemetics zofran and maxolon. I also take my customary daily Losec (an antacid) tablet and my two daily tablets (one milligram each) of dexamethasone (a steroid.) During the previous chemotherapy cycle (the fourth) I also received an additional eight milligrams of dexamethasone intravenously; apparently one of its functions is to act as an antiemetic. Assuming nothing goes wrong, the whole cycle, having started on Thursday, will conclude some time Monday morning, and I should be home Monday afternoon. All going to schedule, on Wednesday I will show up at the local branch of Diagnostic Medlab, deliver a twenty-four hour urine sample which I will have collected on the Tuesday, and will have blood tests; the lab results will go to the hospital and will indicate, for example, how well my kidneys are functioning in the aftermath of chemotherapy cycle five. At this stage, 06:50 on Friday morning, I actually feel okay. I did sleep really well, which makes all the difference in the world; it's not always easy to sleep in hospital. My pulse, which was skittering along at 92 when I woke on Wednesday, is ticking along at 62, which seems to be a normative resting state for me. I have my writing notebooks and some large print library books. And breakfast, which should arrive shortly after 08:00, will be ricebubbles, something even the hospital catering system shouldn't be able to mess up. Outlined above, then, is the chemotherapy regime which my medical team devised for treating my individual case of non-Hodgkin's lymphoma (of the large B-cell type) of the central nervous system (brain and spinal cord.) Additionally, I also had six injections of a chemotherapy agent called Ara-C. These injections were made into the spinal area by a procedure known as a lumbar puncture. I'm glad to say that, having had all six, I'm now scheduled to receive no more. All going well, I'll be able to live out the rest of my life (long or short) without ever again having a lumbar puncture. At this stage I should note yet again that this account is intended to serve as an account of one patient's subjective personal experience. It is not intended to serve as a source of medical information and should not be taken as being a source of medical information or advice. And what is chemotherapy like, subjectively? Well, for me personally, chemotherapy means lying in a hospital bed for days at a time with an IV line in one arm. Occasionally, I do unplug the high-tech drip stand from the mains power supply (a battery takes over the running of the pumps which are controlling the supply of fluid from the IV containers) and push it to the toilet to produce a urine sample. Or, on occasion, push it to the nearby kitchen to make a cup of tea. Or, sometimes, push it to the TV room. If I sit and watch TV, there's a place where I can plug in the drip stand, and there is also a call button for summoning nurses if necessary. During previous admission cycles, I've sometimes sat up in the small hours of the morning watching the news on America's Fox TV, or watching the BBC news. My own experience of chemotherapy is that it's painless but as boring as hell, an ordeal of imprisonment, me being confined (to my bed and its neighborhood) and tethered (leashed to the cumbersome drip stand by one or more IV lines.) By the end of each of the four previous chemotherapy cycles, I've been in jailbreak mode, furiously impatient to be gone. Well, it's now 07:25 on Friday morning. One day is done, and I have four days yet to go. Friday, Saturday, Sunday, Monday. It would be nice to have my computer along, but it's a bit expensive to risk in this insecure environment, and would be a bit difficult to use sitting in bed with a drip in one arm. And I do have books and writing materials. And the TV in the TV room if I'm in the mood. One guy here was sitting in bed complaining about how we don't have Internet access. "We have no access at all to the outside world," he said. Perhaps forgetting his cellphone: he most definitely did have one. As I think I've noted elsewhere, I've been lucky with the way chemotherapy has worked out for me. In my case, I've tolerated methotrexate well. I did have just a little nausea and vomiting during my first chemotherapy cycle, but since then I've been fine. It's worth noting (perhaps not for the first time) that individuals tend to vary in their reaction to chemotherapy, and my own personal experience is not necessarily indicative of what someone else might experience. Above, I've written about the structure of my chemotherapy protocol. Below is a poem which attempts to capture a little more of the flavor of my own personal chemotherapy experience. |
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This is not the fireworks show. This is the fifth cycle: The repetition of the repetitive. Chemotherapy: Poison then antidote. A siege of IV fluids. This is not the exploding sun. This is the therapeutic crypt, A world removed from the realms of Surfing dandelions, croissant cafes, Lipstick kisses and pipebomb hysterias. This is oncology, the world of: Relaxed, friendly, Make yourself at home. No alarm cries of dementia, No rabid chimpanzees of panic, No napalm in the marzipan. Chemotherapy is not a Christmas stocking Stacked with ink spray surprises But a stack of wet bus tickets, Moldering. Cancer is not opera. It is stuffed pillows, Constipated clocks, Blancmange without land mines. In the domain of needles Broccoli is reliably green And I am a reclining spine Gnawed at by zeroes From now until the ricebubble morning. |
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Silence waits on my schedule, Bright with invisible needles. At the cutting edge of the possible The clinical machines are waiting, The statistical spin is waiting: A white space and an outcome. Radiation. The internal probe. The deep destroyer. Igniting The brain, Burning The cancer, Incinerating Some part of my intellect. I will sacrifice For the chance of a happy outcome, Propitiating a god Who gives no refunds, Who carries no insurance, Who gives no guarantees. The actual process Will be credit card painless. Silent as bankruptcy. An action With no audible hammer, With no banner of outcomes, The first results a blankness, A disconnect, Initially truculent, nonconfessing, Mute as the uncut wire. I imagine myself, then, At the outset. Committed to the process. I am a lottery ticket Tiptoeing across the cymbals of consequence Into the mousetrap future. I imagine the first days. Some done, much more still to do. Two and two is still more than three and a half. But damage must have become, And damage, more, Must be inevitable. And how much damage? A world away from kisses, The open mouth of my outcome: Human, still, and competent, Or a maimed broccoli, Uncertain of rodent versus rabbit. Reality is no longer a sugar lump. Instead, I am walking on shadows, Never quite knowing Which shadow might possibly collapse. |
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temporarily because blood count down Friday 15 April 2005. 11:48. At 11:40 today had today's second blood test, the first having shown an apparent drop in my hemoglobin and white blood cell count. Also provided another urine sample (everything in the plastic jug, nothing down the toilet) to get a new pH level as we come up to twelve noon, theoretically methotrexate hour. * * * Friday 15 April 2005. 1215. The lab results on the second blood test have come back and, yes, hemoglobin is down, and my white blood cell count is also down. So: proceed with methotrexate? We're waiting for a decision from a doctor who is in a meeting. * * * The Outcome By 12:25 I got the details. My hemoglobin was down. Also down was the count for my neutrophils, neutrophils being (I had to look this up) one of the two main kinds of white blood cells, the white blood cells being the ones that fight infection. It was suggested that I should have a blood transfusion, so I asked if this was vital. Vital? No, but if I didn't then I might become "symptomatic," meaning I might get short of breath, I might get dizzy or I might get pins and needles in my fingers. I tend to find every new medical procedure stressful, and I'd never had a blood transfusion before, so I was happy when I was permitted to escape from the hospital without having a transfusion, it being understood that I would come in for a transfusion if I did in fact become "symptomatic." I also promised to monitor my temperature zealously in case my reduced white blood cell count resulted in me being hit by some kind of infection. I took away from the hospital two forms for blood tests at my local branch of Diagnostic Medlab, the first scheduled for Monday and the second for Wednesday. I will phone the hospital Thursday morning, by which time the hospital will have the results of both blood tests. And, depending on how my body is doing in recovering from the hit that the blood counts have taken, I either will or will not go in on Thursday for the second attempt at my fifth chemotherapy cycle. Apparently the hit that the blood counts have taken can reasonably be attributed to the impact of methotrexate on my body, and this kind of hit is not unusual. All going well, my body will recover naturally. In the face of this unexpected development, I have a kind of "c'est la vie" feeling. Them's the breaks. What happens happens: that's basically my feeling about my treatment. |
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