cancer patient diary - blog lymphoma patient

Life with Cancer
cancer patient's blog

zenvirus.com
by Hugh Cook

Context:

Cancer patient diary - blog lymphoma patient: author Hugh Cook, previously teaching English in Japan, receives cancer treatment in New Zealand - true story personal experience 2005 - non-Hodgkin's lymphoma central nervous system (brain and spinal cord) - between hospital admissions for treatment, Hugh stays with his parents in Devonport, near Auckland, New Zealand. Treatment began in December 2004 and by March 2005 had included a brain biopsy and three chemotherapy sessions, each five or more days long.

Section 137 Entry 0001. Date: 2005 March 28 Monday.
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Easter was bright, noisy, sunny and social, garish with the voices of children. Talking, eating, drinking wine - that was enough to leave me exhausted by the end of the day.

On Easter Sunday I was at my sister Catherine's place when the phone rang. It was the Easter bunny calling with the first clue for the children, Miss Two and a Half and Master Almost Five Years Old.

The first clue was the letter box. Loot bags in hand, the children set off, and retrieved shiny Easter eggs from the letter box, plus a piece of rhyming verse giving a clue to the next treasure location. Step by step they discovered their way to each cache.

The very last cache was a BIG one which included not just stuff for the littlest ones but, also, Easter Egg packages addresed by name to individual adults, including me.

Sunday, the Easter egg hunting day, was a family only day. But today, Monday, other parents showed up at my sister's place, bringing with them other children for an even noisier, more active time, creating a warm, active world ... a little exhausting to be a spectator to.

Today Monday, at my sister's place, I ate couscous for only the second time in my life. The first time I ate it was in Morocco, years ago. And yesterday, Sunday, I was introduced to a kind of spread which looks a bit like pate but which apparently is based on eggplant and is called babu ghanoushi (say "genoosh").

Easter, then, was a break from the routine. Tomorrow, Tuesday, the world resumes as normal, and for me "normal" will include showing up at hospital to have a lumbar puncture so (a) yet another sample of cerebrospinal fluid can be taken and (b) so I can receive another injection of the anticancer drug Ara C.

Section 137 Entry 0002. Date: 2005 April 01 Friday.
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DISCLAIMER - WARNING!!

This web page is not a source of medical information. This web page is merely one cancer patient's personal account of his personal experience. This web page may contain errors of omission errors of fact, errors of omission and errors of emphasis. It 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. Got a medical question? Ask your doctor. You read this web page at your own risk.

I got admitted to Auckland Hospital at 10:00 yesterday Thursday and by 14:00 today Friday I had received three different forms of chemotherapy.

Starting at 08:00 this morning I had a huge bag of filthy yellow methotrexate administered by IV over four hours, finishing about 12:00. Additionally, at one point a small quantity of vincristine (a small syringe full of the stuff) was administered by being injected into an IV line.

So I had methotrexate and vincristine to start with. Then, at about 13:00, I had my third chemotherapy drug, Ara-C, administered by a needle into the spine. I hate these Ara-C lumbar puncture procedures. Objectively, the discomfort is not great, but I'm uncomfortable with the very idea of someone shoving sharp steel into the area which houses my broadband wiring.

Today I was tired, and, during the lumbar puncture procedure, my tension dripped into hot sweat. I could feel it running off my skin in big soggy drops.

And now I have another three days in hospital to complete this, the fourth of my five-day chemotherapy cycles. Once the all-poisoning methotrexate has had enough time to hit the cancer cells hard, folinic acid will be used to put the methotrexate out of action. I will not be released until my methotrexate levels have dropped to a safe level.

Today I enquired as to what would happen if I did not receive the folinic acid injections - eight or more of them given into the IV line at six-hourly intervals to switch off the destructive methotrexate, which kills not just cancer cells but ordinary cells too.

"Someone told me I would melt."

This, apparently, is not true. Absent the antidote, you don't bubble down into a slurpy pool of cockroach gloop. Rather, what happens is that your liver takes a hit. Also, I found out why it is important for the pH of my urine to stay at eight or more while I have methotrexate in my system: if the pH is not at least eight then there is the danger of the methotrexate getting deposited inside the bladder, causing problems.

Another Ara-C lumbar puncture awaits me on Monday, it seems. Arch your back like a cat and someone puts a needle between two vertebrae, draws off a sample of cerebrospinal fluid (this, at least, is what is being done in my case) and then injects the Ara-C.

At this stage of the fourth admission cycle, I'm feeling down. Although I'm trying to structure my hospital vacuum rationally, allocating time for sleeping (not always easy to do in a world interrupted by blood pressure checks, the beeping of malfunctioning IV machines, call buttons summoning nurses and, on occasion, other people's cellphone calls), reading and writing, at times I fall victim to a kind of "lost in the void" feeling, as captured by the following poem, which I've written during this admission cycle, a poem called IN THE RUINS OF MY COLLAPSED LIFE:

IN THE RUINS OF MY COLLAPSED LIFE

I am lost in a world without platforms.
Peering through a blur of squashed fishes
I look in the darkness and find
Nothing but the eye of a needle.

Randomized choice: this is my problem.
Cut free from my timetables, alienated
Into the void of options.
My rectangular certainties
A bifurcating octopus,
Dissolving.

In the darkness of nowhere
The trees are punctured by petals
Huge with anthracite.
We cannot build a world
Out of cabbage leaves.
At liberty in the desolation of a collapsed context
I endure.

From a pinnacle of terrifying black
A volitional vomiting of watermelons,
Obsessive compulsive,
Blurts through the night.
Job, house, baby, wife:
A slurry of meatloaf.
Flushing.
Walking on dissolving shadows,
I find my alarm clock,
Swallow it,

And wake.

Written with tears in my eyes.

Anway, moving on - life goes on! - today, in Japan, my baby daughter Cornucopia, not yet quite one year old, will be having the first of her life's commencement ceremonies. Japan is very much a nation of ritual, and anything that begins must always begin with a ritual. And so today, at the daycare center which has accepted Cornucopia for the coming year, the year starting right now, there is what my wife has characterized as an "entering ceremony."

In subsequent days, Cornucopia will start attending the day care center, initially following a carefully thought-out acclimatization schedule involving just one hour of motherless day care tomorrow Tuesday (09:00 to 10:00) and building up to full strength day care, eventually hitting the maximum permissible, which is 07:30 to 18:30.

My wife writes:-

"This is regular day care for Cornucopia once I go back to work. It would be very long day for her at the nursery school. I feel sorry to her a little."

I learn from a letter received today that my daughter's daytime nap futon is Futon Number Two; that her class name is "sumire," meaning "violet;" and that her class color is pink. She has, of course, been issued with a regulation cap in the regulation pink.

I have no option. I must persevere, recover and pick up the pieces. Rebuild a world. Meantime, drugs, IV needles, junkie veins, broken dreams, a steroid user's puffy face and internal bleeding.

Today, blood in my right eye: a small smudge of red on the white, and, pooled down beneath the eyelid, a smudge of red a third of the size of my thumbnail. The result of a single broken capillary says the doctor who cheerfully took a look at it. And, yes, I can blame the dexamethasone for this, and, no, I don't have to worry about it, as it will resolve itself in due course.

And so now I lie here, waiting, two fluids running into my through intraveous lines. One is sodium bicarbonate, part of the campaign to keep my pH at eight or above. The other is a mixture containing 0.15% potassium chloride and 0.9% sodium chloride. I am being flushed, cleansed, purified.

This, as I have noted, is the fourth of my scheduled five-day chemotherapy cycles. All going will, there will be just two more cycles to make a total of six. Then a break of a few weeks, then a month or so of radiotherapy. All going well, this whole thing ends. This year. Some time.

DISCLAIMER - WARNING!!

Note: the above touches on part of one patient's personal experience with cancer treatment. Chemotherapy regimes tend to vary as do the ways in which individuals respond to those regimes. This web page is not a source of medical information. This web page is merely one cancer patient's personal account of his personal experience. Got a medical question? Ask your doctor.

Section 137 Entry 0003. Date: 2005 April 11 Monday.
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This morning I kept a 10:00 appointment at Auckland Hospital to find out how my chemotherapy has been going. At this stage I've been through four cycles of chemotherapy (four of a projected six) involving the chemotherapy agents methotrexate and vincristine, and, additionally, I've had six lumbar punctures involving injecting a third chemotherapy agent, Ara-C, into the spine. So how am I going? Well, it's a good news bad news situation.

Good news: I am done with lumbar punctures. No more needles into the spinal area. All finished. The last samples of cerebrospinal fluid have been clear: there is no more lymphoma left in the spine.

Good news: the latest MRI scan of my brain shows that the lymphoma tumor which was conspicuously evident earlier has shrunk away to leave only, as far as I can follow the explanation, a skeleton of itself and some kind of permanent residual damage (the brain does not revert to its original pristine state), and that this response is a "first step" on the way to a cure (assuming we are going to get a cure.)

Bad news: my latest lab tests (both blood tests and a urine test for something called creatinine clearance) indicate that my kidney function has taken a fifty percent hit (compared to what it was earlier). This raises the possibility that there may be methotrexate crystals in my kidneys, but that's just a possibility.

Today I had a fresh blood test and the results of this will determine whether the remaining projected cycles of chemotherapy, cycle five and cycle six, do or do not proceed. If the methotrexate is in fact threatening the kidneys, then cycles five and six will probably be canceled, and we will probably skip ahead to the next step, which is radiotherapy.

On the other hand, depending on what today's blood test shows, it's possible that I could still be admitted to hospital on Thursday, as originally planned, for another five days or so of chemotherapy: cycle five.

Subjectively, today I feel fine, so the news that my kidney function is down (on a temporary basis or a permanent basis I have no idea) does not alarm me. It's like the news that there's residual battle damage left in my brain: if I'm functioning okay then I don't see that I should be fussed about it.

However, there are days on which my energy levels are conspicuously down. I just run out of steam and feel exhausted. Why? The answer that came back was that it's probably the cumulative effect of the chemotherapy, and that I should expect to continue to quite possibly have energy level problems during the projected radiation therapy, too, since fatigue tends to be one of the consequences of radiation therapy.

Anyway, having received both the good news and the bad news, my mood on this bright sunny autumn day (magnificent blue skies weather!) is relaxed and optimistic.

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