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cancer patient's blog |
by Hugh Cook |
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Section 143 Entry 0001. Date: 2005 April 27 Wednesday.
(diary) (previous) (top) (bottom) (next) (topics) (contents) 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. 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 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. Thoughts on Radiotherapy - Risk Analysis, Fears |
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Big brown garbage bag of stuff. Swollen poison Thick as yellow urine. Pissing into my system. I want to scrub away the image With strawberries Sweetened with sunlight. |
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Section 143 Entry 0002. Date: 2005 April 28 Thursday. (diary) (previous) (top) (bottom) (next) (topics) (contents) Today I continued my struggle to recover my health, valiantly eating my way through a big slab of high quality dark chocolate (a gift from a solicitous family member) to benefit from its antioxidant effect, its procyanidins (large polyphenols which are alleged to protect the gastrointestinal tract from carcinogenic changes), its ferulic acid and its epicatechin (a flavonoid which supposedly inhibits the growth of skin cancer in mice). To be honest, I'm not entirely certain that the health benefits justify the sugar intake, but I felt good afterwards, perhaps getting a little high on phenylethylamine (PEA), an endorphin found in (real) chocolate. Perked up by phenylethylamine and the caffeine content of several cups of tea and two of coffee, I spent some time sorting through some old writing files consisting of vocabulary lists, poetry fragments, story ideas and the like. Fragmentary notes which are years old. These are my jottings, my scraps, my midnight thoughts, my off the cuff "let's write this down" thoughts. I found the occasional scrap of mildly interesting stuff, like half a line of poetry saying simply "and God defeated by a condom". I also found a complete orgasm poem, an achieved work of art which I finished years ago but which, for some reason, I have never hitherto offered to the world. I don't know why it didn't occur to me to submit it to the New Yorker or somewhere, but evidently it didn't. Here is the text of the poem: |
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The sheet of paper endured an orgasm Becoming Origami. |
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Also, to my surprise, I found the rough notes for two stories featuring cancer. The idea of cancer was kicking around in my imagination years ago. Maybe this indicates the extent to which "cancer", as a possible disaster, is alive in the imagination of the culture in which I live.
In other words, I'm saying that probably the notion of inputting cancer into these stories arose from cultural inputs (news stories, fiction stories, gossip and so forth) rather than from my own imperatives. Which maybe explains why I never did anything with these ideas. The idea of cancer or the cancerous is peripheral to each story rather than central, but it is there. The rough working notes for the two untitled stories are as follows:- |
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sub-idea: organ traders. Implanted by psychic surgeons. Related sub-idea: diseases as creatures, eg crawling cancer. # example of sub idea: a bucket of eyes -- a pulsing heart -- a liver -- wet organs -- the flies -- psychic surgeon -- his hands going in -- pulling out the cancer -- it writhed and flexed -- sunlight squealed as it flopped off the table and began to pulse toward the gutter -- with -- fire -- red-hot coal -- it writhed -- and died -- |
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* idea: - conglomerations underground of organs formed out of stone, hearts, lungs, livers, veins, eyes, brains, fantasticated rock, dug out, quarried, not always human, the organs of rats and pigs, not by fossilization but by some vagrant freak of creation - huge rocks - their reds and blues - their greens and yellows - in the ninetieth year of the exploitation of this quarry - the organs - showed signs of disease - the lungs of smokers - cancerous testicles - knobbly - unmentionable - a puddled brown - the vomit of poisoned death throes - putrescent - one day - the sun - the next morning - the entire hillside - a mass of reeking rot - swarming with maggots - vultures - at the same time - all the stoneware - underwent a transformation to flesh - the stone heart - and throbbed - beating hideously - quivering to a lisp of silence - gnawed upon by dogs - |
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What surprised me about STORY TWO is some words which seem to prefigure the writing of METASTASIS, a cancer story that I wrote early this year. The words are:-
"the organs - showed signs of disease - the lungs of smokers - cancerous testicles -" These words remind me of a display of diseased organs (some of them damaged by cancer) that I saw in some kind of medical museum many years ago, and which later served as part of the inspiration for the story METASTASIS. At the time that I wrote the story, I had no idea that I had, earlier, been imaginatively exploring the museum material, but the evidence of STORY TWO shows me that I had. This is how writing sometimes works. There are times when materials is used, abandoned, then returned to (consciously or otherwise) years later. And that is how it was with the writing of the METASTASIS story. link to METASTASIS cancer story Section 143 Entry 0003. Date: 2005 May 02 Monday. (diary) (previous) (top) (bottom) (next) (topics) (contents) Back once again to ward 62 in the hematology department at Auckland Hospital. Greeted with smiles in a place we could think of as the House of No Surprises: it's the start of my fifth chemotherapy cycle, and I can be confident that I'm not going to be ambushed by any surprises. Unless something has gone wrong with my blood. But, no, a blood test comes back saying everything's just fine: no problem with the white blood cells and no problem with the red cells either. This attempt (the third attempt) at completing the fifth cycle is going to succeed. I feel relaxed and at ease. When my blood pressure is checked shortly after admission, it's an immaculate 117 over 70. When I sit in the weighing chair (no standing on scales here) my weight (clothed) clocks in at a healthy 73.15 kilograms, way up from my crisis time 62 kilos. I feel that the initial chaos of my uncertainities has coalesced into a reasonably predictable future. I will survive. And, all going well, I will survive reasonably undamaged. Usually, the cannula used for my chemotherapy goes into one of the small veins on the back of a hand or an arm. This time, however, a nurse who does not usually work in the hematology department has chosen, when hooking up the drip, to put the piece of plastic into the big vein in the crook of my right arm. In the hematology department, apparently, it's standard practice not to use this vein. It's left alone against the day of need: it's big and easy to get into, so if somebody needs sudden access to a vein so they can save your life, then that's a good one to go to. And veins do tend to get damaged as they are used: I have some damaged veins now, with some people telling me they may recover in the long term and other people indicating that some of the damage may be permanent or semi-permanent. (Whether in hospital or out of it, if there's a topic that I'm really interested in then my habit is to ask the same question of different people. Sample the answers then average them. My take on the situation is that there is a reasonably good probability that most of my veins, if not all, will recover reasonably well once people stop playing pincushions with my living flesh.) Anyway, more about the cannula:- Up until today, I always thought that a steel needle was used, but that's not the case. What happens is that a steel needle sheathed with a plastic cannula is inserted into the vein, then the needle is withdrawn and only the piece of plastic is left. This is a reminder to myself that I'm not a totally reliable observer, and that I may, at times, misperceive and misreport my own situation. I guess what's happened is that I've always focused on the moment when the needle is inserted. This is something that I watch, so I always see the steel going in. After that, my interest diminishes, so I'm not paying attention as the needle is pulled out. Anyway, so far it's going well, and I am relaxed and confident about this, the fifth cycle. The thought that keeps going through my mind is "only one more time". Assuming I get through this cycle, there will be just one more cycle to do, and then my chemotherapy will be finished. Section 143 Entry 0004. Date: 2005 May 06 Friday. (diary) (previous) (top) (bottom) (next) (topics) (contents) My fifth cycle of chemotherapy finished successfully today. I've been prescribed potassium tablets for three days because my potassium levels are down a bit. Otherwise things are good. Seeing as how this latest hospital admission was for my fifth cycle of chemotherapy, I was naturally pretty much familiar with everything, although occasionally I was made to realize that I didn't know everything: that I'm still an amateur at this. For example, on Monday night my meal turned up together with a computer-generated menu printout informing me that I was being served, amongst other things, "Corned Beef & Mus". The corned beef was, evidently, the vaguely purplish meat, but what was "Mus"? Nobody could tell me, and the only food item (technically, this stuff is "food") which looked as if it might fit the bill was a kind of brownish ectoplasmic gloop, my own personal toxic waste experience, which someone had spilt across the meat. And which I carefully scraped off. My menu was splattered with double asterisk markings, "**", which were explained as meaning "indicates system modif". But, even after all these months (getting on for five full months now) I still haven't figured out what a "modif" might be. |
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