One of a suite of blog entries about the aftermath of chemotherapy and radiation therapy, including brain damage and eyesight damage; a survivor's account of the aftermath of cns lymphoma, non-Hodgkin's lymphoma of the large B-cell variety, in the author's case cancer of the brain and the spinal cord.
THIS IS A PICTURE OF YOUR GOD:
A HUGH COOK READER.
I'm under surveillance. They're watching me, and it's worse than I thought.
I knew my mother was invigilating me, and, on the basis of her scrutiny, she described me as "manic". Probably, to a stranger, I would pass as normal, but to my mother I'm not the quiet me she knows.
I'm fully aware that I'm a little hyper thanks to the drug I'm taking, the dexamethasone, and that my mood is buoyant, too buoyant in the light of the firing squad I'm facing. But I'm not fussed by that. It's a good ride, while it lasts.
But, quite apart from my mother, other eyes have been watching, and watching closely.
This came out on Friday 27 January when we were in the waiting room at the oncology department at Auckland Hospital. My sister asked if she could raise a question with Dr. Oncologist, as I'll call him, the oncologist we were expecting to see ("we" being me, my sister, my mother and my father, not the whole catastrophe but a lot of us.)
"What question?" I asked.
It turns out that my sister's husband, Alan, a trained nurse who has a certain amount of neurological nursing to his credit, had been watching me during a recent dinner, and had observed a certain "absence" in my face, an absence lasting perhaps two and a half minutes.
Alan wondered if it might be an idea for my sister to talk to Dr. Oncologist about the possibility that I might have been having, say, an epileptic episode.
No need, I said. And explained. I had been composing a poem, and had wanted to leave the table and go write it down, but had restrained myself, thinking that would have been rude.
"If Dr. Oncologist wants to know what I was doing," I said, "I'll tell him the truth, which is that I was composing a praise poem for Saddam Hussein."
"I wouldn't do that," said my sister. "If Dr. Oncologist found out you were writing a praise poem for Saddam Hussein, he'd call in the psychiatrist, and that's the last thing that we need."
She also recommended that if I really had been writing a praise poem for Saddam Hussein (and, yes, I really had) I should make a note of how much dexamethasone I was on at the time. That should be part of the historical record. For the record, it was a daily dose of sixteen milligrams, a higher dose than I've ever been on before.
My name was called at the time set for the appointment, and I found myself facing someone I recognized, a doctor who is definitely Not From Here.
I usually forget names in two and a half minutes, or even less, but this guy I greeted by name, much to his surprise, as we had only met once before in the course of human history, and that one-time meeting had been over a year ago. He complimented me on my good memory for names.
I explained, frankly, that I had been curious, on first meeting him, to know where he came from, and had been thinking of him on and off ever since.
"Where do you think I come from?" he said, inviting me to guess.
"Egypt," I said, declaring my opinion with great confidence on the grounds of his name and his obvious ethnicity.
"Not far from there," he said. "Jerusalem."
An interesting way to explain himself, I thought, giving not the name of a nation state but that of a city. Obviously he's answered this question before. And here he is, totally relaxed and absolutely at his ease, fitting in and speaking impeccable English, but, if you were to conjecture a short story around him, what kind of broken world would your imagination encourage you to create?
The explanation I had been given, "Jerusalem", raised a host of conversational options. My parents' friend Arthur, just back from a trip to India, was at dinner on Thursday night, and his next trip, soon, is going to be a happy jaunt to sunny Iran, a nation the Israelis have been threatening to attack, their aim being to take out the threatened nuclear facility before it swings into action.
But that was not the kind of conversation we were here to have.
Instead, we were here to discuss my firing squad.
I have a visual field defect, and what is to be made of that?
Option one is that the lymphoma is back, and is raising the pressure in the brain, crushing the nerves and compromising my eyesight. If so, the dexamethasone should reverse the symptoms. Such a reversal would indicate that the cause of the new eyesight problems is either the brain cancer, back at work again, or some different disease which is raising the pressure in the brain.
Most probably the brain cancer.
If the brain cancer is fingered as the culprit, they won't be doing any more brain surgery. They don't need another sample. Realistically, in all probability, if it's cancer then it will be the same old central nervous system non-Hodgkin's lymphoma coming back again.
The other option is that the radiation I had may have injured the nerves, causing something which I heard, rightly or wrongly, as "demylination", which I think means a kind of stripping of the nerves.
If the radiation is the cause, this will be indicated by the fact that the use of dexamethasone will not bring about a restoration of my vision.
The bad news is that any such damage done by radiation will be irreversible. The good news is that, in all probability, no further degeneration will result, as the body will by now be in repair mode.
Also, although the radiation causes degeneration, the residual effects of the radiation are not going to kill me dead.
The cancer, on the other hand, if it is the cancer back again, quite possibly will. Possibly? Well, probably. Yes, "probably" is the more accurate word.
"I'm sure you've researched CNS lymphoma to the point where you know far more about it than me," said my doctor, who I will call Dr. Jerusalem.
In the face of his generous courtesy, I confessed that I had abandoned research long ago. I gave up. Too much to know.
He explained, then, that CNS lymphoma almost never escapes from its natural habitat, the brain and spinal cord, out into the wider areas of the body. Consequently, there is no point hunting for clues in places outside the brain and spinal cord.
A magnetic resonance imaging scan is the next logical step. It's been requested. It was requested on January 24, and I will probably have it next week.
Interpreting the result will be a challenge, because my brain has been messed up by chemotherapy and by radiation. Because of the residual effects of the radiation, my brain is constantly changing, and will continue to change, at a rate which is significant for interpreting scans, for perhaps the next ten to fifteen years.
If it is the cancer back again, then treatment will be drugs into the spine.
"The spine?" I said, with some dismay.
I don't like lumbar punctures (spinal taps) and I've had enough of them to have a very firm opinion about how much I don't like them. But Dr. Jerusalem that the only real options are to administer drugs intrathecally (into the theca, the sheath which houses the spinal cord) or directly into the brain.
Because of the brain-blood barrier, there are few drugs which, if introduced into a vein in the arm, can make their way to the brain.
One such drug is methotrexate, which I received in massive doses last year, but this will probably never be used on me again. I've had radiation, and following radiation with a further siege of methotrexate is a course of action which has a high probability of resulting in severe dementia, not years in the future but soon, within six months. Not long at all.
Instead, if I do need chemotherapy, they will probably do some surgery and implant a drug-administering device in my spinal area. It will be sealed off from the outside world so there will be no hygiene maintenance problems, no hole going into my body, and, while they can take it out, they would probably leave it there forever.
The thought of surgery doesn't worry me. After steroid injections into each eye, after neurosurgery, after two vitretomies and two cataract operations, I'm at ease with the idea of people working on my body with sharps and bladed instruments.
Surgery is quick and it gets results.
Obviously, then, if the chemotherapy option is going to result in the implantation of a drug-giving device which will deliver its dose in stages until it finally runs out and then just sits there, I'm not going to end up being incarcerated for days at a time in a cancer ward with an intravenous drip hanging out of my arm. Whatever horrors lie ahead, another extended course of the dreaded hospital food is not going to be one of them.
I had been seriously wargaming incarceration strategies, but now those war games were redundant.
At this stage my father piped up. He had a question. At the final meeting we had last year with my radiation oncologist, Dr. Gillian Campbell, she had said, hadn't she, that, if the cancer were to return, treatment would be only palliative. No cure would be possible.
Before Dr. Jerusalem could answer that, I put my oar in. I remembered that meeting clearly, and my recollection was that, while Dr. Campbell did indicate that my survival chances would be slim if the cancer returned, she did not set those chances at zero.
My father thought I had heard it wrong, but Dr. Jerusalem said he rather favored my take on the situation. His manner of delivering this information to my father was diplomatically nuanced, but the message, nevertheless, was clear. Yes, a slim chance of survival, but not a zero chance.
That, however, was something we could talk about later, once the picture was clearer, perhaps in two or three weeks. Meantime, there was no need to rush. I had my dexamethasone, which, in the short term, would do as much for me as anything else.
It's cancer, okay, the leisured disease, the disease you have all the time in the world for, not a massive heart attack in progress, not a bullet wound bleeding you to your death.
So, although I do sometimes get things wrong, in this case my perception of the situation was accurate.
Thinking back to the final meeting last year with Dr. Campbell, the radiation oncologist, I formed a thesis. My sister broached the subject of my death, saying something like "If the cancer were to return, am I correct in thinking that treatment would only be palliative?"
She is a trained nurse, and was, at one time, an oncology nurse, and presumably my father credited that question with expertise. The question (this is my surmise) ended up getting translated into a statement of fact, which my father filed away under the file marked "sayings of the nurse oncologist".
But, with all respect to my sister, who has been of great assistance thanks to her professional expertise in the fields of both cancer nursing and counseling, she is still, to me, my little sister.
Everything she says sorry if this hits you hard when you read this, sis attracts an automatic "little sister" discount. I was born first, so that's the way it works.
When my sister spoke, I heard the question, but the question was a cue for me to tune in to the radiation oncologist and listen to what she said. To listen very carefully. And to take notes.
And my recollection squares with Dr. Jerusalem's take on the situation. Even if the cancer is back, my chances are not zero. If I recall, the words that Dr. Campbell used after giving me the "probably die" message were "but you could still try".
I am the brain-damaged one, and, as I have already conceded, there are times when I get it wrong that. I know that, and do not try to deny it. But there are also times when I get it right, and this is one of them. If it is the cancer coming back, I still do have that narrow window of opportunity to shoot for.
Dr. Jerusalem found out how much dexamethasone I was taking, told me to cut the does by half, down to eight milligrams a day, and wrote me a prescription for more dexamethasone and for the two supplementary drugs that I ended up taking last year to counteract the side effects which I experienced, an acidic stomach and, on top of that, vomiting.
The two drugs were Losec and Maxalon.
And with that, after almost an hour of Dr. Jerusalem's time, we were done. My father thanked Dr. Jerusalem for spending all that time with us, and commented that we always came away feeling we had been granted, generously, all the time we needed to talk through the issues.
My outcome, then, is that radiation damage will be diagnosed, and that I will go on living with my current visual defect, which is doable, given that I can read and type, or that, alternatively, I am diagnosed as having cancer once again, in which case I undergo some surgery in the spinal area then go about my business until I either recover or (more likely) die.
All this to become clearer in the next two to three weeks.
We left oncology and started to thread our way back through the bowels of the hospital campus, the most confusing conglomeration of architectural bafflements on the planet.
My father led us by an underground route which he has come to know well, a route which goes through horror movie corridors which are virtually tunnels, the lighting almost down to zero in some places.
"Are you sure you know where you're going?" said my mother.
My father was totally sure, and with good reason.
Eventually, a twist, a turn, daylight, a road, another entry, an escalator up and then we were at the elevator which would take us down to the start of a new tunnel, a definite tunnel, no way could you legitimately call it a corridor.
"What was it last time that gave you constipation?" said my mother.
Since she asked, I started to answer was we piled into the crowded elevator.
"Last time," I began.
"Not now," said my mother.
I had started to I was going to finish. But she put her hand over my mouth and shut me up. After we got out of the elevator and were heading down the tunnel, I gave her the answer.
"Last time, during chemotherapy, I had an anti-emetic called Zofran, and it has a reputation for causing constipation. And, mother, in an age of avian flu, we do not put our hands over other people's mouths, regardless of the provocation."
We wended our way (in a proper horror movie, most of us could easily have been killed en route) to the carpark building, dropped my sister off at her place at work, then drove to the fish market down by the sea.
At the market, I bought myself some sushi.
"What's that?" she said, pointing at something white on rice.
"Squid," I said.
My mother didn't like the idea of eating raw squid, but, when we got back home, I gave her the piece of sushi which was actually egg, a foodstuff I do not eat.
I decided to have soy sauce with my sushi, and went to fetch one of the tiny little blue saucers into which we pour the soy sauce. But the saucers were not in the cupboard. After doing a slight double-take the little saucers should be right there, ready to hand I realized that the saucers were not in my parents' house here in the suburb of Devonport, here in New Zealand, but in the other house, the house which I have not set foot in for over a year, the house, which, conceivably, I will never see again in what is left of my living life. The house that, all things going to plan, I would have reached on the morning of Thursday the 26th.
Flying into Narita airport, as per a long-standing fantasy, to arrive early in the morning, then making my way by bus and train to what is my truer home.
At the hospital, my mother asked Dr. Jerusalem what I should tell my wife. But he said, and quite correctly, that this was my judgment call, not his.
With sushi done, I picked up the phone and hit TALK then AUTO and then the number 5. The speed dialer swung into action, and the answer phone twelve hours away by air, the answer phone in the city of Yokohama, picked up and answered.
I left a message on the answer phone, spelling out the options. Option one, radiation damage, with, probably, in that case, no further damage to follow. Option two, cancer. If option two, then death is a possibility. But I am not necessarily going to die. At least, not just yet.
At this stage, then, the future is up in the air.