living with chemotherapy - cancer patient diary

Section 138 Entry 0001. Date: 2005 April 13 Wednesday.
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Content of this April 13 blog entry: living with chemotherapy: my (Hugh Cook's) own low-key experience. Context: I am being admitted to hospital once in every two weeks for five days of chemotherapy, and the fifth of a projected set of six such five-day chemotherapy cycles starts tomorrow, Thursday.

* * *

One of the things that I've learnt during my illness is that I cannot accurately gauge my own intellectual function. There have been times at which I have felt crystal clear but when, in retrospect, I was misperceiving things, or getting a rathedr blurred perception of the world.

Of course, everyone experiences little mental glitches from time to time, but, now, when these things happen, I don't know whether it's just life as usual or a symptom of structural brain damage.

Yesterday, for example, I was waiting at home for Dr. Porter to phone me to tell me if I would or would not be going to hospital tomorrow Thursday for the fifth of six projected cycles of chemotherapy. But he didn't phone.

Then, after 10:00, my father told me, no, at Monday's meeting he didn't say he would phone you. He said you were to phone him.

That was completely the reverse of my understanding. I had a very clear memory of Dr. Porter saying that he would phone me. However, my father was at the meeting. And what I've learnt from past experience is that if my father's memory or my sister's memory conflicts with mine, then they are right and I am wrong.

So I phoned Dr. Porter about 11:00, apologized for calling in late and asked what the situation was. He found the results of my latest blood tests on the computer, and apparently they're fine. Kidney function seems to be normal. So I'm to show up tomorrow at 10:00 to be tethered to a drip stand for another five days.

Emotionally, I'm neutral about this. On the one hand, I don't want to spend another five days as a prisoner of the hospital system. On the other hand, my longterm survival chances are presumably greater if I can complete all six scheduled chemotherapy cycles.

Felt tired yesterday and went to bed before 21:00. Woke about 04:30, felt rested and so started my day. As the Immunologically Compromised Man, the first thing I did was to take my temperature with my high tech digital thermometer, and it came in at 36.4 degrees Celsius, which is pretty much normal for me in the morning.

Then I dropped a capsule of an antacid called Losec, one of only two medications I'm taking on a daily basis. The other is dexamethasone: I'm still taking two tablets a day, a one-milligram tablet after breakfast and a second one-milligram tablet after lunch. And I'm still having nosebleeds and a little internal bleeding (currently I have a purplish bruised patch on the right elbow) as a consequence of the dexamethasone.

Anyway. Today's plan is to push ahead this morning on the BAMBOO HORSES novel, taking advantage of the fact that I feel rested and ready to work. At twelve noon I'm scheduled to show up at sister Catherine's place for lunch, my big social event of the day.

I've nothing planned for the afternoon. When I became ill, one of the very first decisions that I made was that I should vow to do less, to slow down, to take things easier. And my practical experience has shown that this is necessary: my stamina levels are not what they are.

So. Let's get into the working day and push ahead with BAMBOO HORSES. While I do, I'll listen to Tchaikovsky's Sixth Symphony. (I'm not a big classical music fan, but my parents' CD collection is mostly classics, everything from the standard encyclopedia composers like Mozart to guys I've never heard of before.)

* * *

A little later: cancel the symphony. A bit too much at this early hour of the morning. Too much energy, blaring and thumping. I'll go with Bach, the Brandenburg Concertos. Or maybe this oddball CD, TIBETAN CHANT.

* * *

This morning I hit a little memory problem while working on the BAMBOO HORSES novel. Ken's wife, Valencia, has been getting drunk, and to authenticate the moment I give her a specific wine to drink, this being cabernet sauvignon blanc.

Then, checking with my computer's resources (encyclopedia and dictionary) I find that no such wine is possible. It seems that "cabernet sauvignon" designates either a specific type of red wine or the black grape used to make that wine. It follows that "cabernet sauvignon" cannot be "blanc." And "sauvignon" is a kind of grape that is used for making white wine.

This is not a major intellectual disaster. It's not as if my encyclopediac knowledge of wine has suddenly been wiped out, because the truth is that I've never known much about wine except that it's a liquid which comes in bottles and which is comprised of water plus alcohol.

However, even so, the truth is that I have a distinct memory of having recently bought, from the supermarket, a bottle of wine labeled "cabernet sauvignon blanc."

Obviously a false memory.

When I took a break from writing and sat down with a cup of tea I had a range of books to choose from. (I'll usually read a book while taking a break.) And the book which took my eye was "Ourselves Growing Older." And the section in the book which attracted my attention was section 28, "Memory Lapse and Memory Loss."

Which contains, amongst other things, the statement (page 530) that "Diseases and physical disorders can be accompanied by emotional distress that can lead to increased forgetfulness, especially when treatment in an unfamiliar place, such as a hospital or nursing home, is required." Yeah, I've been there, done that - my first admission for chemotherapy ended with me pretty much completely collapsing intellectually, and losing track of the date by two days.

The quote above is from the Fontana Paperbacks 1989 British Edition of "Ourselves Growing Older," a version of an American original by Paula Brown Doress and Diana Laskin Siegal with some chapters - not the one quoted from - rewritten for the British edition by Jean Shapiro.

The target market for the book seems to be women, with the material on the cover mentioning Doress and Siegal and then saying "and The Midlife and Older Women Book Project". However, it's a book I might read more of myself. A body growing older is a body growing older, and section 24 is titled "Cancer."

I don't spend a lot of time thinking about my own deterioration, actual or potential, but my thoughts do drift back to the topic now and then.

At this stage, with the original tumor having been reduced to a defeated skeleton of itself, it seems that I'm still functional. I do suffer the occasional mental glitch, but, then, who doesn't? And, if I have at this stage suffered a slight degree of irreversible damage as a consequence, my judgment would be that it's no big deal.

As things are, I can still handle my daily schedule, write, update my website, install new software and figure out how to use it, and so forth. And, subjectively, I feel fine, except for the times when I hit a wall, intellectually, on account of exhaustion, pure and simple.

However.

Up ahead, I have the radiotherapy. And, in terms of intellectual function (and potential damage to the eyes, and so forth) that's a lottery. So I am conscious of the fact that, later this year, I am going to be spinning the roulette wheel, with one red chip sitting gleaming on the wheel, with that one red chip being my life.

I won't say that this thought is dominant, but, yes, the question of potential intellectual disintegration does arise now and again.

So.

Today's bad news is that I got a bit glitched about wine. The good news is that, in the course of rummaging around in my computer's resources, I thought to check up on the "brut" versus "sec" question.

A few weeks ago, I and my father and my brother Charles were trying to figure out the difference between "brut" and "sec." The verdict was that probably "brut" is dryer than "sec," but this wasn't entirely clearcut because one of the dictionaries we were consulting Englished French "brut" as something like "wild" or "rough."

However, the dictionary I looked at today unambiguously says that "brut" is used to designate wine which is "extremely dry," which I take it as meaning that we were correct in concluding that "brut" is a significant step dryer than "sec."

Focusing on the day's good news, then: if I get out of this alive, I'm going to end up knowing more than I did about wine, classical music and (maybe) Tibetan chant.

A statement which may seem to trivialize the situation. But the reality is that my life has settled into something of a routine, and the words "mundane" and "quotidian" apply. I assume that I'm on the path to survival, but, even if I'm dying (which, statistically, is still a possibility at this stage) my days are pretty uneventful.

Events in the life of a cancer patient, today: open a packet of green peas; add green peas to boiling water; add instant noodles to boiling water; open a tin of tuna (for a change, not the usual tomato and basil flavor but a can of the sweet Thai chili flavor); eat breakfast; wash the empty tuna can with detergent and boiling water (because the inorganic rubbish is only collected once a week, and any uncleansed fishy cans will start to stink.)

It is, one has to say, a quiet and singularly undramatic life, particularly since I don't get any systematic feedback from the disease process. I do know that (erratically) on some days I feel fine and on other days I feel pretty lousy, with really low energy levels, but this inconsistent pattern of "okay days" and "stamina depleted" days doesn't give me any picture of how I'm faring internally.

For the outcome, the result, I'm reliant upon the medical system, and the verdicts delivered by blood tests and MRI scans and so forth. My kidney function is down? Well, maybe, but I don't feel any different. The tumor has gone, leaving just a skeleton of itself? Well, I've never had any "having a tumor" sensation (the brain, of course, does not send out any sensory signals about itself.)

What becomes dominant, then, is not the cancer itself (which sinks into the background) but the daily routine. The question: so what am I going to do today? Today's day-specific answer being (a) to push ahead with BAMBOO HORSES as far as I can today; (b) to go to sister Catherine's for lunch; and (c) to do nothing in the afternoon (well, that's the plan, but, in fact, I'll probably spend more time with "Ourselves Growing Older," maybe the section on cancer.)

* * *

Post mortem on the day (toward the end of the day):

Looking back on my quiet and simple day, I'd say it was a success, but, at the same time, it did bring home to me the limited nature of my physical resources.

To start with, I had to abandon work on BAMBOO HORSES in the morning when I hit a wall, feeling exhausted. I set my alarm clock, lay down for an hour and actually went off to sleep.

Having volunteered to provide lunch, I'd allowed myself an hour to wander down to the shops and pick up some simple provisions: fruit, garlic bread, marinated mussels and some eggplant-based babu ghanoushi spread. That proved to be the right amount of time.

Lunch with my sister went very well, the two children (Miss Two and a Half and Master Almost Five Years Old) behaving very well, and we decided that later in the year, after my sixth round of chemotherapy, we will have a celebratory meal at Sigdi's, a local Indian restaurant that we've been meaning to dine at for some time.

After lunch, I sat in the sun for a while reading the newspaper and chatting, then said goodbye and wandered home. Feeling good but tired.

I laid down and slept a bit, and woke with my pulse racing along at 92. Sick? I took my temperature, in case it was elevated, but it was an acceptable 37.1 degrees.

In summary, then, my baseline state is that I generally feel okay. If I'm idling in neutral then, physically, I'm relaxed and comfortable. But, once I start to push the limits mentally (keyboard work) or physically (going out and doing stuff) I pretty soon run up against restrictions.

I guess the answer is just to accept the decisions that I made at the outset: to do less, to slow down, to take things easier. To acknowledge my limits and live within them.

I'm assuming that the fatigue, at this stage, is primarily due to the cumulative effects of the chemotherapy. (If I remember correctly, Dr. Porter affirmed that assumption at our last meeting.) And I know that the planned radiotherapy can also cause fatigue. So the prognosis seems to be that I can expect to live with fatigue issues for some months yet.

Which is okay.

My attitude at the moment is one of fatalistic acceptance. Very early in my treatment - pretty well right from the begining, in fact - I saw myself as being like a rocket launched on a set trajectory, with no decision junctions. That's still my feeling. There aren't really any options.

I don't really want to go to hospital for another two chemotherapy cycles, but, given that it seems that my kidneys are equal to the test, it would be foolish to say no. Completing the six cycles is the best way to kill the cancer.

And then comes the radiotherapy.

And I don't like the idea of the damage potential of the radiotherapy. But the theory on which my treatment is based says that having the radiotherapy is the best way to make sure that the cancer stays dead. And, while I don't like the idea of having radiation into the eyes, my radiotherapists have raised the issue of the eyes possibly being a sanctuary site for cancer, difficult to deal with effectively by chemotherapy.

So I'm launched on this trajectory, with no options. But, although I'm living within strict limits, I can still accomplish things by working steadily, on a daily basis, within my limits. While at home I've been working on the BAMBOO HORSES novel, and, during the next five days, in hospital, I'll be working on my poetry, and also, possibly, on short stories and novels.

And I may do some thinking and planning for the OOLONG MORBLOCK project, a big, messy fantasy fiction project which has already absorbed some years of effort, and from which I hope, at some stage in the future, to produce a string of actual finished books.

The status of the OOLONG MORBLOCK project, incidentally, is that, at the moment, I've produced a few short stories set in the Oolong Morblock milieu, I've finished an elaborate map of the area, and I have incredibly messy drafts of various partially conceptualized plots amounting, in total, to something in excess of a quarter of a million words.

("Roughly a million words," says a note somewhere on my website, but the truth is that right now I don't have an accurate idea of just how much text I have, so any figure I might give would be just a wild guess.)

My basic problem with the OOLONG MORBLOCK project is that I let my ambition get way out of hand at the planning stage. What I need to do now, initially, is pull back and focus on plotting and writing just one self-contained novel to get the series rolling, otherwise I'll be floundering around in a world of false starts for the rest of my life.

So working on plotting a first OOLONG MORBLOCK novel (at this stage I'm toying with ideals for something provisionally called POWERS OF OOLONG MORBLOCK) is something I may work on in my upcoming five days in hospital.

I'll also be taking some large print library books to hospital, and I anticipate spending at least a little of the time writing letters.

That said, the reality is that lying in a hospital bed for days at a time with an intravenous drip running into your arm is no fun at all. Assuming I go on to complete not just the fifth chemotherapy cycle but the sixth as well, then I will end up having spent over thirty days in hospital, which is quite a substantial chunk of time.

Well, that was today. I didn't write down absolutely everything that happened, but this blog entry does, I think, a good job of capturing the flavor of life now: a very low key routine. Living in an alternate reality (goodbye job, goobye Japan) which is not of my choosing but which is survivable.

And, all going well, if I come through the trip round the radioactive roulette wheel in good shape, I will get my life back. I will get through this, perhaps a bit damaged and bent out of shape, and carry on where I left off. That's what I'm working for.

I still don't have a firm schedule, but, provisionally, I can expect to finish up chemotherapy early in May. There will be a break between chemotherapy and radiotherapy. I'm not sure how long, but perhaps as long as six weeks. Then there will be a month of radiotherapy, on a daily basis. And then, I guess, some kind of fingers-crossed post mortem stage, at which point, maybe round about June or July, I would expect to get a clearer idea of exactly what the future holds.

As to when I might realistically get back to Japan, I don't really know, but I'm hoping for later this year, or early 2006 at the latest.

Sitting here writing this at the end of the day to the strains of Johan Pachelbel's canon and gigue. Content, for the moment.
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