(7) 27 June 2013 – It’s Not Brain Surgery (Well, Actually It Is)
When six tumors were found in my torso, I started researching systemic therapies again. The latest, greatest weapons against melanoma in 2013 are anti-PD1 immunotherapy agents. They work by targeting PD-1 receptors on the body’s T-cells (“PD” stands for “programmed death”), instructing them to attack cancer. One of these new drugs, lambrolizumab, has produced an objective response (tumor control or shrinkage) in 50% of melanoma patients in clinical trials.
Fifty percent is amazing – like Russian roulette with three chambers loaded. Those are odds I’d jump at.
Claudia and I started investigating clinical trials for anti-PD1 agents. (clinicaltrials.gov is the best resource I know for this.) As a result, I found myself, on the morning of Tuesday, June 11, in a pleasant, mustard-coloured clinic in Santa Monica, presenting myself for consultation with a leading melanoma researcher who conducts many clinical trials. Walking to the clinic from my room at the Day’s Inn, I passed beneath beautiful blue flowering trees I later learned are jacarandas. The clinic itself was very LA – they share a building with CBS Films.
The first day went well. I was examined, and told I would qualify for a lambro trial. Then I was told the trial I wanted was closed, but they could surely get me in another one.
Clinical trials usually have more than one arm, allowing the effects of the experimental therapy to be compared objectively to other treatments, typically older standards of care. I knew that one of the lambro trials used old-style chemotherapy in its control arm—either dacarbazene, which I’d had before, or P&C (paclitaxel and carboplaten). In my case, if I were randomized into the chemo arm, I would get P&C. This was not a tempting prospect. In one study, 60 out of 61 melanoma patients treated with P&C were dead after seven months.
The trial which attracted me to LA was different, in that it had no ‘old-chemo’ arm—patients in all six streams received lambro in different doses on different schedules. So to be told the trial was full was an unpleasant surprise. But it was quickly righted. The doctor said he had to check something, left the room, came back in five minutes and told me the drug company had held a slot for me. Knowing I was coming to LA, he had alerted the company, and they’d kept a spot open for me.
So that day ended well. I was most impressed by the pleasant and efficient manner in which the US health care system was working for me. I was assigned a scheduler, who arranged an impressive series of procedures for me to get done during the next day and half I’d be in LA: an MRI, CT, EKG, chest xray, blood work, and biopsy. The purpose of the MRI was to check for brain tumors. Presence of an active brain tumor would exclude me from the lambro trial, but I wasn’t worried about this because (a) I had no symptoms and (b) I’d had a CT head scan in Vancouver just three weeks earlier that turned up nothing. On Wednesday morning, I reported to another facility for the MRI, then walked back to the first clinic for the remaining tests. Blood samples were taken during the prep for the CT. The technician offered to check to see what other blood work I’d need done that day, so he could draw all the tubes at once from the same IV. Again, I was impressed by his proactive efficiency, the willingness to explore opportunities to do things better rather than passively follow a bureaucratically defined sequence of steps.
When the technician returned he said someone would come and talk to me. This was the first hint there could be a fly in the ointment. Shortly, my doctor appeared, removed the IV, and led me to another room where they were reviewing my MRI. “That’s your brain,” he said. Someone had drawn a green box around a small area on the side of my right cerebral cortex, annotated with the measurement, “1.7 cm. “Unfortunately the MRI found a small tumor. You need to fly home, have that surgically removed, and get some radiation. Then come back here and we’ll get you into another trial.”
The doctor said the operation looked straightforward because the tumor was on the surface of the brain, and not large. “It isn’t brain surgery. Well, actually it is.” I appreciated the humor.
So, everything changed. I went across the street for lunch, and called Claudia. “Are you sitting down?” I emailed the news to my North Vancouver oncologist. “Please arrange surgery.” I walked back to the hotel and called Westjet to rebook my flight. There was no problem; I could fly home that afternoon.
Once home, things got busier. I was impressed by the effective and timely response of the Canadian health care system. (Our outcomes are, on average, better than in the US, at much lower cost. The US system works best for those who can afford it.) By Thursday evening, I was feeling symptoms from the growing tumor – a throbbing pressure in my head – and on Friday I woke with odd pains in the fingers of my left hand. I got some powerful steroids that controlled those symptoms entirely. I saw my oncologist Monday, met the neurosurgeon Tuesday, and reported for surgery Friday, June 21 – last Friday. Now the tumor is out.
So far, so good. The neurosurgeon, whom I like, assures me everything went well. The worst of it was two nights in hospital (hospitals these days are no place for rest and recuperation), and eight days of steroids, which, although they’re effective at controlling brain inflammation, kept me from sleeping much. Now I’m resting at home, feeling better every day, planning my next steps.
When my plans suddenly changed, I realized I had three hills to climb. The first was the brain surgery. Now I’ve made that ascent and am gazing across the valley to the next summit – radiation therapy on my brain, to disinfect it of remaining melanoma cells. What I’ve read about radiation therapy on the brain is not comforting. Whole-brain radiation therapy (WBRT) is followed by an alarmingly high incidemce of dementia. Correlation, in this case, does not imply causation, and the causal story is hard to sort out. All WBRT patients have problems before they start radiation. Either the cancer itself, or chemotherapy, or some other treatment or concurrent condition could contribute to these dementia statistics. The nature of WBRT is scatter-shot, a bunch of tiny bullets fired through my brain. So, not something to undertake lightly. But it is effective at preventing local recurrence, which I need to do in order to climb the third hill, at the top of which is another anti-PD1 trial.
So, right now I’m gazing across at the next hill, taking it all in, planning my route. I am learning more about alternatives to WBRT, including more precisely targeted stereotactic RT. Some drugs may be able to mitigate radiation’s side-effects. There is also a strategy of avoiding the hippocampus, the part of the brain that lays down new memories. I will seek more than one opinion.
That brings this melanoma journal up to date. My family are with me, maintaining my “well-nourished” status with delicious food, including creative desserts, for which I am extremely grateful. So many people have been rallying around, phoning and offering support, I feel buoyed up on all sides by good wishes. In fact, I feel immersed in love, which makes me very happy.
Does it take a life-threatening disease to teach us how to live? That seems perverse, and all too typically human.
Susan Kahn, who, throughout these developments, has become a good friend, suggested that I write more about how it is to cope with melanoma from a Phantom Self point of view. She remarked that if I can get through this without suffering from personal anxiety, then I could get through just about anything. She even thought others might find my experiences helpful. I don’t know about that, but I’m willing to try – Susan, this is for you.
I do think the point of view I’ve arrived at through the Phantom Self project has made it a great deal easier for me to face this health crisis. The main psychological effect of understanding that my connections to my future self are not fundamentally different from my connections to other people is to weaken my concern for myself and strengthen my concern for others. That such a change in attitude should emerge from a deeper understanding of the self is nothing new. Derek Parfit said as much, in his understated way, in 1984. “After my death,” he wrote:
…there will later be some memories about my life. And there may later be thoughts that are influenced by mine, or things done as the result of my advice. My death will break the more direct relations between my present experiences and future experiences, but it will not break various other relations. This is all there is to the fact that there will be no one living who will be me. Now that I have seen this, my death seems to me less bad. [Parfit, 1984, p 281]
Parfit called his change of viewpoint “liberating.” The description seems apt. He wrote:
When I believed that my existence was such a further fact, I seemed imprisoned in myself. My life seemed like a glass tunnel, through which I was moving faster every year, and at the end of which there was darkness. When I changed my view, the walls of my glass tunnel disappeared. I now live in the open air. There is still a difference between my life and the lives of other people. But the difference is less. Other people are closer. I am less concerned about the rest of my own life, and more concerned about the lives of others. [Parfit, 1984, p 281]
I understand Parfit’s glass tunnel imagery. I well remember, in years past, having similarly oppressive thoughts about the time I had left to live running out. Our species is given to such thoughts. Here’s a quote I’ve used before from Ian Brown:
Looking at it from the age of 55…getting older looks like a discouraging journey into loneliness. … I can’t imagine getting older, therefore weaker and lonelier, without resenting it. The slightest health scare makes me anxious and the anxiety makes me cranky and the crankiness makes me feel bitter, even mistreated. [Brown, 2009
Brown’s attitude isn’t hard to understand. Understanding it, we may also deplore, or at least regret it, and hope that, most of the time, we’ll be able to rise above such feelings rather than be ground down by them. Deploring and regretting this attitude, however, is entirely consistent with believing that the attitude is realistic – that one’s only life really is running out, and that the time ahead, past middle age, is likely to be, on average, a time of poorer health, less vigor, perhaps fewer opportunities for joy.
But I have come to realize that Brown’s attitude, which was once my attitude, is not realistic. It is based on a subtle mistake. Realizing that, I am no longer troubled by such thoughts.
Belief in the special, separate unity of the self comes naturally to humans. It is the result of a trick of natural selection. Having a self-model is an adaptive feature of complex animals that are capable of moving around. The self-models of such animals are tightly coupled to their motivational systems, which include their emotional systems. The appearance of an immediate threat to self triggers a strong emotional response in most animals, activating the amygdala and launching a flood of psychosomatic and behavioural responses which tend to help them survive the crisis.
Humans are unlike most other animals in that, with our highly developed prefrontal cortices, we are capable of imagining and making detailed plans for the future. As part of imagining the future, we imagine ourselves in the future. Visualizing a threat to oneself in the future triggers an emotional, motivational response similar to that which would occur if the threat were actually happening on the present scene. The response is enabled by strong projections from the prefrontal cortex to the amygdala and associated limbic regions of the brain. The ability to label an imagined entity as ‘self,’ and have it trigger this kind of emotional response, is an adaptation that, perhaps more than any other, propelled our species into our present position of earthly dominance. Unfortunately, this adaptation – which I call ‘the human kludge’ (the subject of my next post) – came at a considerable cost in unnecessary suffering. It is an effective design, but not a very good one. It is far from optimal, and certainly not elegant.
One way to view this idea is as another outgrowth of the scientific physicalism that has illuminated so much else. Looking at what we have learned in the past few hundred years, it is hard not to be impressed by scientific physicalism as the source of our most far-reaching and productive changes in outlook. Out of it came the demise of geocentrism. When the direction “down” was displaced as a fundamental orientation of the universe, so our parochial planet was displaced as its centre. Ceding centre stage is always salutary; it resulted in a widening of horizons, a deeper engagement with extraterrestrial reality.
Scientific physicalism was also Darwin’s mindset. We no longer see ourselves as the pinnacle of creation, but as blood relatives of all other species on this planet, an extended family of creative solutions to the problem of life. They reflect us in countless ways, and we will learn from them for a long time to come. Understanding natural selection, we come to know that we are not the product of a perfect design process. We are beginning to see opportunities to improve on our own nature.
The productivity of scientific physicalism stems from its ontological parsimony. Science does not assume the existence of entities that are not needed to explain observations. Physicalists saw the opportunity to dispense with a fixed framework of space-time in which all objects had a position and velocity. There is no such framework; hence the insights of relativity. Physicalists do not need to assume the existence of God, either. What most people don’t quite realize yet is that the selves they imagine themselves to be can also be dropped from the scientific ontology, with a resulting gain, not loss, in its explanatory power. If you simply look at what is, then Parfit’s famous statement:
Ordinary survival is about as bad as being destroyed and having a replica. [Parfit, 1984, p 280]
gains the presumption of truth, for there is no evidence for the existence of anything so mysterious as its negation implies. I should point out that Parfit’s characterization of ordinary survival as ‘bad’ is playful; this insight into what survival amounts to is all to the good. To embrace it is to escape the glass tunnel and engage with life on a broader scale and a longer time dimension, one that extends long after one’s biological death.
One more thing. My approach to this subject has been, and remains, one of intellectual discovery. I’ve always been more interested in learning the truth than in changing myself. Advocates of ‘spiritual practice’ sometimes tell me I’m doomed to failure; the truth cannot be grasped intellectually. Respectfully, I think the jury is out on that. Western philosophers in the analytical tradition have justly been criticized for mistaking their own failures of imagination for metaphysical necessity. So, too, past failures to intellectually grasp religious insights into ‘no-self’ should not be taken as proof that all such attempts in future will also fail. Scientific progress has achieved much, and will achieve much more. I don’t know of any convincing argument that science cannot leap this hurdle.
At the same time, although I have never been especially drawn to spiritual practice, let me hold out an olive branch to you practitioners. There may be more than one path to the same destination. The more I look at this subject theoretically, the more I am aware of its enormous practical implications. At bottom, we are alike in seeing an opportunity for improvement – for restructuring our own motivational frameworks for the better.
Brown, Ian (2009) “Am I fearful of death? No, I cannot say I am,” The Globe and Mail, Feb 21, 2009
Parfit, Derek (1984) Reasons and Persons, Oxford University Press.