Author: robertstainton

Ontario has an interesting category of specialist doctor. Hereabouts, the MD psychotherapist is a certified medical doctor – hence those two initials – but one who specializes in mental health. Typically, too, their practice doesn’t focus on psychopharmacology but rather on talk therapy. I am very fortunate to have both a psychiatrist, Dr. D (who taught me Dialectical Behavioral Therapy, but now mostly monitors my medications on a monthly basis) and an MD psychotherapist, Dr. W, whom I meet with weekly about my ongoing mental trials and tribulations.

I introduce Dr. W here because she did an exercise with me yesterday that was very powerful, and I wanted to share some results. What she asked me to reflect on was: What are the things such that, if I haven’t done them, I’d feel regret on my deathbed? That is, what activities are such that, if I didn’t carry them out between now and my death, I couldn’t die in peace?

This is a very telling question about my hopes and my values. Indeed, it is so telling, I think going over it might be valuable for nearly everyone, as they choose priorities in their lives.

There are a number of obvious candidates for this especially dark version of a “bucket list”, but which didn’t make it. A first example. I have been trying to make history of philosophy of language (HOPOL) a thriving sub-field. To explain, no political philosopher in the West worth her salt would be wholly unaware of key figures in the history of Western political philosophy – e.g., Plato, Aristotle, Hobbes or Locke. Yet commonly philosophers of language don’t even know that all four figures wrote extensively on philosophical issues about language. Still less is it common among my fellow travelers to know what such thinkers had to say. If I haven’t made HOPOL mainstream by the time my tumour sends me across to the other side of the River Styx, would I feel regret? Would peace elude me? Not really. Granted, it’s something I’d love to see, but it isn’t dear enough to my heart to merit a place on this morbid list of mine. Relatedly, shifting to a slightly different example, I’ve long hoped to write an introduction to HOPOL in the West; no such volume exists in English. But I could certainly die in peace even if I don’t find the time and energy to write such a book.

What does make the list? One thing jumped out during my discussion with Dr. W: spending time visiting with friends and family. For instance, I really, really hope to be well enough to visit my in-laws and my dear friends in Uruguay during Canada’s winter (and not only because I want to escape the cold!) And I really hope that my darling daughter Moon can meet up with us somewhere and sometime in 2026-27. I miss her.

Evidently, based on this exercise, it’s those kinds of human bonds which lie at the heart of my values. I’d be so curious to hear what others would prioritize, as they reflect on their own mortality.

P.S. As classes resume, students, staff and fellow faculty are all kindly asking how I’m doing these days. I thought I’d share here, as a postscript, what I’ve been telling folks. I say to them something along these lines: I’m not terrific, but I’m not terrible either. I’m okay, somewhere in-between. That I’m especially non-terrible emerges when I reflect that, 13 months ago, it wasn’t clear whether I’d make it to Christmas 2025! More specifically, my fear symptoms have been really bad, but my depression symptoms are well under control: on the mental front, not terrific, but not terrible. I’m still lightheaded and out of breath; at one point I couldn’t even swallow water, and needed intravenous fluids and minor surgery to overcome dehydration; and my surgeon, when pressed, said that he was “confident that I’d remain stable for through 2026”. Not terrific, then, on the physical side. Still, I’m back at work 50%, bought a flight to Scandinavia for a family trip, and am able to walk up stairs and little hills, albeit slowly. And I can eat soft foods. So, not terrible. Doing okay.

There’s more good news and bad news on the health front. I’ll begin with the physical and then turn to mental health stuff.

Way back in mid-February I collapsed at the hospital. Anita had dropped me at the clinic entrance and had gone to park. I made it through the sliding doors but then ended up on the floor. Turns out, I was super dehydrated: I was given three litres of IV saline and lots of juice, and still didn’t need to urinate! That was probably at fault. Just to be sure, however, my radiation doctor had me do an ECG.

Well, the electrocardiogram came back abnormal. There was suspicion of a blockage. It was even suspected that I’d experienced a couple of mild heart attacks in the past! Meanwhile, I have continued to be out of breath in a severe way. It’s not just walking up a few stairs that gets me huffing and puffing. Simply standing up can make me feel winded. I have also been prone to fainting. (A few weeks ago, I lost consciousness from standing up too quickly and walking across a hotel room. I went head-first into a mirror and broke it. Ouch. Luckily, I didn’t cut myself.)

I was thus referred to a cardiologist and underwent a bunch of follow-up tests in the subsequent weeks. A second ECG. A holter monitor test. An echocardiogram.

The good news with respect to this first issue is that I finally met the specialist yesterday, five months after the incident, and none of the results showed any problems with my heart. He wants me to do even more cardiac tests to rule out various unlikely causes, but he felt confident that my exertion issues weren’t stemming from the heart. Long/short, that first ECG was a false positive.

The bad news is that we now have no idea why I find it hard to walk up a mild incline, and keep getting lightheaded even when merely rising from a seated position.

There’s also GN-BN on the cancer front. My first bout of chemotherapy was super aggressive and left me enormously fatigued. Worse, far from shrinking the tumour, the “mass” (as the doctors like to call it) actually grew over the course of the treatment; and it grew in such a way that made resection of the cancer too dangerous. Enter treatment protocol number two: different chemo plus 28 rounds of radiation. That didn’t help much either. My aorta remained encased in the cancerous tissue. Treatment regime number three, however, has at last achieved some positive response. In light of the immunotherapy, the tumour got smaller, and it got less metabolically active. Additional good news is that my most recent CT scan did not show any spread of the cancer — it’s still limited to the esophagus and stomach.

How am I doing mentally in light of all this? Same deal: GN-BN. The good news is that I haven’t been depressed (much), let alone actively suicidal. Yes, I still notice “opportunities to commit suicide”. But I have no urges. The bad news is that my fear symptoms continue. They may be less severe and less frequent. It does sometimes seem that way these last days. This could be due to the addition of yet another drug to my cocktail: Vraylar (cariprazine), an atypical antipsychotic. Be that as it may, progress or not, I still get hit with jarring fright several times each day, in a way that can stop me in my tracks. I went to a conference in Toronto this week, for instance, and had to come home early because the fear episodes left me unable to follow the talks. What’s more, I was getting mentally and physically exhausted after just one presentation, let alone eight hours worth.

Dr. D has suggested that I write to the psychopharmacologist at Toronto Western, Dr. Mansur, who consulted on my case a bunch of years ago. I’m to ask him if there are any newer medications that might prove more efficacious against the fear. I plan to do so this week.

In sum, I’m doing okay. I’m not great. I’m not terrible. All told, that’s pretty good, I suppose, given that last August, when the tumour was first identified during the endoscopy, we didn’t know if I’d make it to Christmas 2025!

Addendum (July 13, 2026)

I didn’t write a lot above about how my mental state connects to my physical state. That may strike readers as a serious lacuna. The thing is, there doesn’t seem to be much connection! My fear symptoms long pre-date the cancer diagnosis. I’ve had them for years. They mostly disappeared while I was doing chemo in the fall; what’s more, they didn’t get worse when we were told that surgery would be too dangerous, such that I became permanently stuck living with the tumour. Finally, when immunotherapy helped, I didn’t notice any change in my emotional states from that either.

The exception is that sometimes the shortness of breath can make me feel afraid and sad. But, first, this doesn’t happen that often. Second, that’s hardly pathological: any “normal”, non-Bipolar person, would feel occasionally dismayed in various ways by getting winded merely from, say, getting out of a car.

There is a physiological connection. Specifically, when I get out of breath, my heart rate goes up, my breathing gets heavy, and I can’t readily continue whatever I’m doing. All these things also happen when a rush of fear comes over me. However, I think this is a coincidence more than a causal chain — whether from lung-troubles to fear-troubles or vice versa. The two ailments happen to share a few symptoms.

I had a very insightful discussion with my psychotherapist, Dr. W. She wondered whether feeling afraid hadn’t become my baseline over the last few years. A very intriguing idea. I thought I’d expand on it here, and explain my strategy for coping.

When I was a child, I was a sad, scared and lonely person – one who experienced moments of happiness, yes, but was not a happy child. (Many, many of the happy moments I recall were brought about by my two maiden aunts, Aunt Georgina and Aunt Ruth, who often looked after we four kids and took us on spontaneous adventures. I’m forever grateful to them for those moments.) As an adolescent, however, things changed radically. I became outgoing, popular, successful in school. It was a new “me”. Yes, there remained hard times post-childhood. Indeed, I’ve contemplated suicide throughout my life. But I’d shifted entirely around age 17: I became a happy person who, like everyone else, occasionally experienced sad moments.

Dr. W’s thought was this. Between the usual effects of aging; the various troubling medical diagnoses in my mid-50s (I learned all at once that I suffered from high cholesterol, type II diabetes, and vasovagal syncope); and then inoperable esophageal cancer, my body has come to store masses of fear. Indeed, she suggested, I had reverted to being sad/fearful Robbie S., after many years of living as hyper-resilient Prof. Robert J. Stainton, Ph.D.

On this scenario, I had been misconstruing my frequent “fear episodes”. I had been thinking of them as mysteriously arising ex nihilo, not grounded in any reason. That’s why they weren’t “about” anything, not even anything imaginary. They seemed, instead, to be provoked willy-nilly by something wholly physiological, such as a random rush of cortisol into my brain. They were, in this respect, more like having a hot flash than anything else. Dr. W wondered, however: Maybe what’s going on instead is that I am holding all this fear constantly, and it sometimes bubbles up to the surface when I’m unable to mask it? Put otherwise, what was happening was not that Prof. Robert J. Stainton, Ph.D., was regularly experiencing, in an inexplicable way, unprovoked episodes of the-sensation-as-of-fear. No, rather little Robbie S. had reasserted himself. Granted, Robbie S. was often distracted enough that his fear wasn’t manifesting all the time. But that fearful person was always just below the surface, waiting to pop out.

In light of this possibility, I have tried revising my self-talk when the fear-symptoms show up. What I had been telling myself, as a kind of internal mantra, was: “This is just a brain malfunction which is giving you an illusory feeling of fear. The sensation-as-of-fear can’t hurt you. Just let it be there”. In light of Dr. W’s thoughts, I’ve modified that to:

There’s plenty of legitimate reasons for your body to store fear. It’s thus natural that feelings of fear should bubble to the surface sometimes. However, there isn’t any imminent danger. There’s nothing to flee right now, nothing to fight. And, as you’ve experienced many times, the sensation of fear is unpleasant, but it itself can’t hurt you, and it will go away shortly.

Lately I have been talking a lot with friends/family and mental health professionals about my on-going, free-floating feelings of fear. I haven’t arrived at any ultimate helpful conclusions, let alone a “fix”. Nonetheless, I thought I’d share some thoughts, whether stolen from others or arrived at on my own.

1) I don’t really know whether it’s helpful or appropriate to describe what happens to me with the word ‘fear’. When I’m being cautious about phrasing, I’ll talk about “the feeling-as-of-fear”.

On the one hand, as I explained in a recent blog post, the sensation isn’t “about” anything – not even an unreal thing like a ghost or Brian Mulroney’s return to power – whereas regular fears have what philosophers call “intensional objects”. Heck, it doesn’t even seem to be a response to external events: it seems to be internally caused. (The other day, for instance, I was reheating some Ethiopian food in the microwave. I put the plate in, I closed the microwave’s door, and I started to enter in the number of minutes and seconds. Whoosh! A terrible rush of fear-sensation. Does my reaction really merit the term ‘fear’?) Also, my wife Anita has suggested that if I can conceptualize the event as just “unpleasantness”, rather than as genuine fear, it may stop me from fretting about it so much – about how irrational it is, about how hard it is to get rid of, etc.

On the other hand, I was explaining to my friend Ann, who was one of my first philosophy teachers at Glendon College, the ways in which what happens isn’t like fear. She astutely pointed out, however, that it’s not merely a nasty feeling/sensation either. Many of the behavioral dispositions and physiological changes triggered by genuine, full-blown fear come along with it. My heart races. My chest and muscles tighten. I try to identify the cause, so as to escape from it.

Maybe I should call it ‘quasi-fear’?

2) As I was explaining to my friend Lindi how the fear-episodes seem to come out of nowhere, she made a helpful observation. She said it sounds like the onset of a hot flash. Not being a menopausal woman, I haven’t myself experienced hot flashes, but from her description of how they occur it seems an apt analogy. Both come unbidden and unwelcome, unpredictably and pretty much out of nowhere. Both seem to be caused by an internal rush of hormones, not by any external circumstance.

3) Several folks have found the following analogy helpful when understanding my fear-like symptoms. Everyone knows how it feels to awaken from a nightmare, realize that the whole thing was an illusion and that there’s no real danger, and yet continue to feel afraid for a minute or so. The sensations and physiological changes don’t disappear immediately post-awakening. Well, imagine having that “hangover from a nightmare” showing up just any old time throughout the day, and lasting between 30 minutes and an hour. Something like that is what I experience multiple times a day. It’s very unpleasant. And it’s very puzzling.

4) The best advice I’ve received is to follow Buddhist practice and just let the fear-sensation be there. Don’t exacerbate the situation by questioning the fear, trying to get rid of it, etc. The thing is, that advice is really, really hard to follow, and for good reason. As my friend Chris stressed to me, evolution made fear feel very unpleasant in order to i) rapidly draw your full attention and thereby ii) get you to recognize and evade the urgent danger. It’s just like physical pain in that respect: it’s supposed to feel awful and be hard to ignore. So, yes, I really do try to “radically accept” the quasi-fear; but I often can’t succeed. And that I can’t is built into the very purpose of fear.

5) My psychiatrist Dr. D regularly reminds me that there are plenty of fear-inducing things going on in my life right now, including especially CANCER. She once asked me, insightfully: “What would you think of a person with a diagnosis of inoperable cancer who didn’t feel the least bit afraid?” The answer is: such a person would be bizarre.

And so, sometimes when the fear-sensation hits, I say to myself that it makes sense, it’s to be expected – rather than telling myself that there’s no danger, that it’s a malfunction in my brain, that it’s a harmless albeit nasty feeling, etc. I’m not wholly convinced, however, that the (seeming) fear really is related to my cancer diagnosis. First, I have suffered from this for at least half a dozen years; hence the onset was long, long before I knew about the tumour. Second, mysteriously enough, the symptom went into remission starting around September, right when I learned about my illness! It popped up occasionally during the winter, including on Christmas day. But it didn’t restart in earnest until my regular cancer treatments halted.

In sum: granted, I do have a reason to feel afraid (viz., malignant cancer); but I’m not sure that it is the reason why I randomly get scared. (Recalling the example above, what does reheating leftover Ethiopian lentils and injera have to do with a tumour in my esophagus?)

6) The only patterns that I’ve noticed are… Though I don’t wake up in the morning feeling afraid, the fear often comes on while I’m preparing breakfast. It doesn’t even wait until I sit down to work. Moreover, if I lay down to meditate and calm myself, and I happen to fall asleep, I wake up more scared than ever. So, there seems to be some sort of connection to awakening.

7) Finally, a word on drugs for the fear-sensations. Benzodiazepines, the medication of choice for anxiety, don’t make it go away. However, if I take a clonazepam at the onset, as the fear begins to grow, it seems to keep things from worsening. I guess that’s good news.

Even better, I discovered through sheer serendipity a drug that is super effective against the fear. I was having a minor surgical procedure, related to my chemotheraphy; I was getting really afraid as the surgeon began to cut; and so, a nurse injected me with a sedative. The fear utterly evaporated in about 30 seconds! I can hardly describe the relief.

Great news, except… the drug she used was fentanyl! I googled to see whether one could be treated for severe anxiety with that drug, or one of its close cousins, its scary name notwithstanding. Unfortunately, as I experienced for myself post-surgery, the drug wears off quite rapidly. Worse, when it’s out of one’s system, the fear comes back even worse than before. Only a higher dose will fix the latter. As the nurse said to me: used in a clinical setting, for the right reasons, fentanyl is a great medication, but…

There are some developments regarding my cancer treatment, and others regarding my emotional well-being. I thought I’d offer an update on both, and on how they relate.

Starting with the physical stuff, readers will recall that my tumour was deemed inoperable because, despite two rounds of chemo and one of radiation over the fall and winter, it remained intertwined with my aorta. The next phase, which began last week, is a combination of those chemo drugs that seemed to help previously, with immunotherapy. The latter was only recently approved by Health Canada for my kind of cancer, so it’s quite new.

Immunotherapy is a bit of medical magic, and I understand only the basics, but I’ll try to explain in simplified terms. Every successful cancer has a means to defeat the body’s immune system — that’s why they don’t get killed off immediately. There are about half a dozen strategies that cancers have developed, but they all result in the immune system mostly leaving the tumour alone. In immunotherapy, the medical team takes a biopsy of your cancerous growth, analyzes its DNA, and figures out how it is tricking the body’s immune system. They then develop and deploy a sort of intravenous vaccine which tells your body: “Don’t be tricked. The material with this DNA sequence really is dangerous. Kill it”. The immune system, thus supercharged, then attacks the cancer.

There’s a massive range of potential outcomes, we’ve been told. None is individually probable. They run the gamut from:

a) the immunotherapy is so successful that surgery becomes viable after all, the surgical team can resect the tumour, and I am cured

to

z) the immune system goes haywire and starts attacking vital organs (the liver, the pancreas), thereby shuffling me off this mortal coil in short order.

As best I can make out, the likeliest outcome is that the drug cocktail slows down the progress of the disease; meanwhile, I experience mild, tolerable side-effects; such that I can continue to receive chemo-plus-immunotherapy as treatment, every few weeks or so, for the rest of my days.

How am I feeling about all this? Not good.

I find the uncertainty extremely difficult to take. I can’t make any kind of reasonable plan for the months ahead. Will I be cured by Fall term? Or will I be dead by Fall term? Will I be so incapacitated by the tumour and the treatment regime that I’m alive but unable to work, travel, etc.? My psychiatrist Dr. D. tells me that the most important step for me here is to do the Buddhist thing and forego control. Let the world unfold, and find joy where I can. That’s excellent advice. But that is so hard for me in particular: when I was a young child, moments of chaos in the family were moments of danger; unsurprisingly then, in adulthood I’ve learned to really relish being in the driver’s seat. Radical acceptance of a lack of control is thus very, very hard.

I also dread the potential of cancer as a chronic illness, such that I never get “back to normal”. That’s a bad enough scenario if the side-effects are mild. It’s a very unhappy scenario if I am left fatigued, nauseous and in pain for the rest of my days, with my usual activities curtailed. In the latter situation, I will face hard choices about how bad my quality of life can become before I decide I’ve simply had enough. Which takes me again to “I can’t plan”: As my friend Samantha pointed out to me, it’s hard to foresee what “too much suffering” will be, because we humans are very adaptable, and what may seem unbearable in the abstract sometimes turns out to be no big deal.

Finally, I don’t know why my bipolar symptoms subsided back in the fall. Now they are back in spades, and I don’t know why they’ve returned. Granted, it does make sense that someone diagnosed with inoperable cancer would sometimes feel sad and frightened. But I feel suicidally sad these days. Desperately sad. And I feel bizarrely frightened – scared in ways that lack rhyme or reason. Yesterday, for instance, I was attending fascinating and entertaining grad student presentations. Suddenly, the fear came rushing over me. I could no longer follow the students’ talks because I was so afraid. That continued for about 45 minutes, then subsided as mysteriously as it had appeared. Two hours later, chatting with the presenters over beer and pizza at the Grad Club, the fear came back. Again, out of nowhere. I had to hurry home.

I’ve stumbled across an analogy that seems to help non-sufferers understand what it’s like to be bizarrely frightened. We all have experienced waking up from a nightmare and continuing to have the sensation-of-fear for a minute or two, even though we know that the scary thing was an illusion. Now imagine being stuck in that unnecessarily fearful state for an hour or so, fully aware that there’s no grounds for it. That’s what it’s like for me several times a day nowadays. I really don’t like it.

For quite a while there – several months, in fact – my depressive Bipolar symptoms were basically in remission. No suicidal ideations. No free-floating anxiety. The improvement coincided roughly with my cancer diagnosis. As I wrote back then, I really don’t know why I got better. Not to say that I was symptom-free all through the fall and early winter. In particular, the steroids that they gave me during my chemotherapy set off mild hypomanias. But, thankfully, those have never been dangerous or destructive in my case.

I thought I’d write today about my fear-symptoms, as they are making a reappearance. I’m very unhappy about it.

Let me start with some philosophy and linguistics pertaining to phrases like ‘I’m afraid’. One can believe something false, but not know, remember or discover that such-and-such, if such-and-such isn’t the case. Many people believe, e.g., that Obama was born in Africa, even though that’s untrue. But no one has discovered that he was, no one remembers that he was, etc. Nor could they: that’s just not how such verbs function. (At best, one can seem to know/discover/remember that p when p isn’t true.) Crucially, ‘I fear that __’ belongs squarely with ‘I believe that__’ in this respect: one can fear, e.g., that Brian Mulroney will become Prime Minister of Canada again, even though that won’t happen. (He’s no longer with us.)

Relatedly, fears can be about things that don’t even exist! My niece Lisa was once afraid of Santa Claus. I learned this too late, when I was enthusing to her about how old St Nick was coming right to her house, to this very living room. She got terrified. She was afraid of a non-existent entity! And Lisa was no anomaly. Many Latin Americans were afraid of the chupa-cabra monster, children all over fear the boogey man, and so on. In sum, and again like ‘believe that __’, it’s not merely the case that such folks seem to be afraid of what-is-not; they really are afraid of “the unreal” sometimes.

One more linguistico-philosophical observation about fear. Most of the time, fears have what philosophers and linguists call “an object” that they are about, even if said object doesn’t really exist in our concrete reality. Ditto for belief. Lisa’s fear was about Santa. The conspiracy theorists’ belief was about Obama. What’s weird is that there can be free-floating fear sensations, without any thing the fear pertains to. Occasionally, one can simply have the sensation-as-of-fear, but it isn’t about anything. In this respect, fear may be even stranger than belief: you can’t have a belief that isn’t about anything, not even anything unreal.

This takes me at last to my Bipolar fear symptoms and what they are often like. Picture walking down a dark alley at night, worried that someone is going to jump you. Now focus on the unpleasant sensation, as opposed to the imagined alley and its potential inhabitants. Some people – myself included – get that sensation totally out of the blue, for no apparent reason. I don’t know whether it’s apt to call this sort of thing an actual fear. As above, often I describe it as “the feeling-as-of-fear”. What I do know, all too well, is that the feeling is extremely unpleasant even when it’s just “the-feeling-as-of fear”, without any subject matter.

I used to rack my brain wondering: what have I noticed sub-consciously that has triggered this fear sensation? That is, what am I afraid of, but such that I didn’t notice its presence consciously? All very Freudian. I nowadays think that’s a fool’s game. Instead, here’s how I understand the situation now: some fear hormone, say cortisol, goes flowing into my brain for some purely physiological reason; that hormone causes me to have the fear-sensation (i.e., the one I asked you to imagine); this makes me feel afraid, even though there is nothing that I’m afraid of! I’m not even afraid of something “unreal” like a monster. I just feel terror.

As I say, I went months without this symptom showing up. Then, on Christmas day, the fear-sensation came back for no obvious reason. That was super unpleasant – not just because the sensation of fear is designed by evolution to be something animals avoid, but because I experienced a “meta fear”, i.e., the fear that my fear-symptoms were returning. My base-level fear may not have been about anything at all, but the meta-fear did have an “object” that it was “about”, namely getting afraid.

Since my chemo and radiation treatments have ended, I’ve been getting that free-floating “fear without an external cause” multiple times per day. Is it because I’m not distracted anymore? Is it because, not visiting the clinic anymore, I’m not interacting with as many people daily? I really don’t know. But man am I dismayed that my fear symptoms have come back.

My old chum Rachel from University of Toronto thoughtfully asked me the other day about what words I like to use to describe my “cancer situation”. ‘Journey’? ‘Ordeal’? ‘Battle’? I have spent a good while thinking about her question, and I decided that I’d share those thoughts here on my Bipolar Blog, because they reflect my mental attitudes.

Meanwhile, I have big scary news to share at the end.

Rachel herself had used ‘battle’ in her “how are you doing?” email, but then checked whether I myself would accept that word. Well, it certainly didn’t cause any offense. It’s not even entirely wrong. But ‘battle’ seems both too short term/temporary and too negative. ‘Ordeal’ is even worse on the negativity front. As I’ve noted here and on Facebook, there have been lots of positives to my cancer treatment: for instance, I’ve experienced the kindness and support from friends, family, medical professionals, and even total strangers. I feel so grateful for that. And my depression and anxiety have actually been better during my treatment.

I don’t much like ‘your cancer journey’ for precisely the opposite reason. At least now, when chemo and radiation are still fresh in my mind, ‘journey’ seems too anodyne, given the suffering that’s involved in dealing with cancer. Granted, some journeys do have awful moments: you’re on a lovely trip through Eastern Europe; your wallet and phone get stolen; and then your hotel goes bankrupt; and then… But it feels too rough a ride to characterize August through March as a mere “journey”. What’s more, this “trip” isn’t going to end well.

I think the phrase I like best is ‘roller coaster ride’. A quick recap should make clear why. At the very start, we didn’t even know whether the “mass” (the doctor’s euphemism) was malignant. Then the biopsy and CT scan results came back, and we learned that it was indeed potentially very dangerous, and might have already spread to my liver and lymph nodes. That was a low point on the ride. The PET scan and MRI, however, ruled out metastasis beyond the esophagus. One of the medical team, at that point, described what I had as “a very curable cancer”; this was clearly a high point. For most of the fall and winter my mood was positive, my Bipolar symptoms were essentially in remission, and I categorized my quality of life as “good”. My friend Jay, during a week-long visit to London, even said: “My friend Rob is back!”

Well, I never quite got back to that “mountain” on the coaster. Radiation and chemotherapy got very tough, especially the fatigue. I didn’t know one could be that tired and not be on one’s death bed. But that wasn’t even the lowest point on the ride, emotionally or physically. That came when a follow up CT scan showed, mid-winter, that the tumour was encasing my aorta and might as a result be inoperable. Then, over the last few weeks, the roller coaster continued its downward trajectory. My free-floating fear returned. My suicidal ideations became frequent again. Why? I’m not sure. I suspect that I became just so, so tired of being so, so tired. I have also been experiencing severe pain in my sternum – from the cumulative effect of 28 radiation treatments – to the point that it hurt too much to even drink liquids. What’s more, when the daily treatments were over, back in mid-February, my days became unstructured, I had less social contact, etc. In any case, my mood definitely fell and my Bipolar symptoms were able to get a solid grip.

That brings me to the present, and the lowest point on the roller coaster ride so far. Last week, I had a whole series of tests, to see how effective the second round of chemo + radiation had been. The news isn’t good. Yes, there was a clinically significant response: the tumour got smaller, and the biomarkers in my bloodstream that the cancer gives off (specifically, the protein C9-19) have gotten lower. However, the most desired effect of treatment did not appear. My aorta remains intertwined with the tumour, such that operating is too dangerous. And it isn’t just dangerous in putting my life at risk. That’s something I’d be up for: better a mere 50% chance of survival + actual cure over a 100% chance of slow decay and eventual death. Because of the many veins that come out of the aorta and connect immediately to the spine, however, there would be a high risk of my awakening paralyzed, and remaining that way for the rest of my days. That’s not something I’m willing to risk. In short, though it’s unclear what the timeline may be, I’m now very likely to die from this cancer. Trying to cure it is, for now, basically “off the table”. Maybe this constitutes a roller coaster crash, not just a deep dip!

I’ll end with the mental effects of this news. My psychiatrist Dr. D has said that my highest priority should be letting go of control. I am not – and, in particular, my executive function and intellect are not – in the driver’s seat nowadays. I need to radically accept that. The thing I am finding hardest, however, is not being able to plan at all. I don’t know what this unhappy medical update means for work, for travel… for anything. I think I’d actually suffer less if my medical team had predicted, “You have 18 months left to live. The first 12 you’ll be able to work and fish and… The final six, you’ll be stuck at home, on heavy doses of pain killer”. The uncertainty feels worse than even that dire scenario. Nonetheless, I’ll try to let life, and its joys, just happen.

The results from a battery of cancer tests are back, and it’s not good news. The eight weeks of chemo weren’t wholly ineffective. My swallowing symptoms improved, at least temporarily; and the amount of the antigen that the tumour releases into my bloodstream – a protein called CA19-9 — went down significantly after each session of chemotherapy. However, the scans show that the tumour actually grew. Most importantly, the new imaging showed my aorta, the body’s major artery, encased in cancerous tissue. The best explanation we’ve heard of this cluster of results is that the chemo did indeed kill some of the tumour, but the dead tissue stayed in situ and even got bigger. This is called a desmoplastic reaction. (See here: https://en.wikipedia.org/wiki/Desmoplasia.)

That may mean that my cancer is now inoperable.

Though not good, the news isn’t yet catastrophic. Way, way back, the plan had been to try a traditional combination of chemo and radiation. That’s not what we ended up doing, because a new protocol supported by trials in Europe called for more aggressive chemo without radiation instead. However, radiation is now back on the table: I’ll begin radiotherapy early in the New Year. Maybe this can shrink the tumour, and put surgery squarely back on the table. We’ve also been told that immunotherapy might become locally available for this kind of cancer in the next couple of years.

Next steps? 1) Meet with the oncology team to decide whether, in addition to radiation, a different cocktail of drugs would be useful. That will happen the day after tomorrow. 2) Get an MRI as soon as possible, to determine how intertwined the tumour is with my aorta, and thus whether it can be safely removed after all. That is scheduled for December 30th. What is unfortunately not on the agenda at this point are trips to warm and sunny climes. I’ll need to be more stable before I get on any planes. Sigh.

This being a blog about bipolar, I should comment on how I’m doing mood-wise. I continue to be pretty much in remission when it comes to symptoms like depression, anxiety, etc. And I’m still pretty much mystified about why this is the case. After all, long-story-short, we may be shifting back from “Our aim is to cure your cancer” to “Our aim is to slow down the progress of the disease, to give you more time”. That’s both sad and scary. Nonetheless, as my student Donovan observed, I was able to recount the rather bleak situation to him without breaking into tears; whereas, as he added, in years past I would have cried about much less serious matters. My sister-in-law Larisa also commented yesterday, as I shared the bad news with her, that she hasn’t seen me look so positive in years. I agree.

I hope my mental health remains good once treatment is done. Heck, I hope my physical health follows suit!

I wrote a while back about a puzzle of mental wellness. The puzzle was this: Here I am facing one of the scariest things a person can, namely a diagnosis of malignant cancer, with the concomitant chemotherapy and surgery. Here I am facing many things to feel sad about: having to cancel my classes; not being able to escape Canadian winter this year; scratching outings galore because I’m way too tired (e.g., a hockey game tomorrow evening). Given this, I expected that my Bipolar symptoms would be through the roof.

Instead, I am doing the best mental health wise that I have in years.

Yes, suicidal thoughts sometimes intrude. In particular, I still notice “opportunities for suicide” in a way that a neurotypical person surely would not (e.g., I can’t put away a sharp kitchen knife without recognizing that I could cut my wrists with it.) Yes, some things scare me unduly, including having the PICC line inserted into my arm, heading straight for the top of my heart. Nonetheless, my grief symptoms have subsided. Even more striking, at least since I began chemo at the start of October, I haven’t experienced the free-floating anxiety that used to plague me – that feeling of great fear popping up for seemingly no reason.

I don’t really know what’s going on. Why am I pretty much in remission as far as my Bipolar symptoms go? I listed some interrelated candidate factors in a previous blog post:

• I am challenged by a “mountain”, namely the cancer and its treatment;
• I am distracted by lots of meaningful activities;
• I’ve had my attention drawn to life events that I would be sorry to miss;
• I’m focused on the present, and on my body;
• I’m mentally well enough that the outpouring of kindness and support “penetrates” my psyche in a positive way.

My addendum, and the point of this post, is this. Typically, I expect the world from myself. Tracing to feelings of inadequacy as a child, I have always felt the need to prove myself 100%: my father drilled into me and my siblings that we were useless/worthless; as a result, I’ve always stressed the need for complete success. This has been very good for my career, but problematic when it comes to my moods. A minute failing can trigger not just depressed feelings, but the urge to die.

My thought, in light of this, is that a sixth factor is playing out in my sub-conscious. Because I have cancer, and because I am doing chemo, I am allowing myself to simply get by. I’m accepting that I won’t be performing my best. For instance, I am allowing myself to nap three times a day, even though there are tasks that aren’t getting done; I am deleting some email messages without even acknowledging them; I’m saying ‘No’ to invitations where I could have helped out.

Society cuts cancer patients quite a bit of slack. More than that, we still get to count as heroes even when all and any “superpowers” are manifestly absent. Maybe this is allowing me to go less hard on myself? If that is what’s going on in my sub-conscious these days, the lesson I need to learn for the future, post-cancer, is that I’m worthwhile, I’m useful, even when I’m not “knocking it out of the park” all the time.

Anita and I spent the whole day yesterday at the Archie and Irene Verspeeten Cancer Centre at London’s Victoria Hospital. I was getting my third round of chemo, hooked up to an IV on site from 8:30 am to 4:00 pm.

Being there reminded me of something Anita posted about on Facebook, and which I’ve discussed with several friends and with various members of my Bipolar treatment team. You see, this is the very same hospital where I was locked down on the Psych Ward for seven weeks in the spring of 2024. And, as Anita pointed out, the two experiences couldn’t be more different. We think the example speaks volumes both about society’s contrasting attitudes to physical versus mental illness, and about the success of research in those two domains.

Let’s start here. There is a Cancer Centre, and it’s proudly named after a family. The signs are plastered everywhere and there’s also a splashy centre-specific website with pictures of the donors. (See here: https://www.lhsc.on.ca/verspeeten-family-cancer-centre/about-verspeeten-family-cancer-centre.) The physical space is impressive: the atrium is beautifully decorated, with three floors of hanging plants, an aquarium, and even an electric piano for patient use. The centre also has its own information booth, staffed by paid employees. Most telling for me: there’s a gong near the exit doors which patients clang when they have completed their treatment regime; the whole building hears the noise and claps supportively in response. Well, and of course there’s a dedicated Tim Hortons! In contrast, psychiatry is split across about four locations at Vic, on different floors, in different wings. The closest thing to a welcoming atrium or info booth would be the pat-down screening and bag check by the specially trained, albeit pleasant, security guards! No donors have sponsored anything, as far as one can see. And no one celebrates with them when a patient gets released.

In the Cancer Centre, everything is massively well-organized. There are assigned numbers for those waiting in line, so staff don’t have to call out actual names on the PA. (A privacy measure.) There is a TV monitor with those numbers, to tell readers what stage the cancer patient is at that day (e.g., waiting, meds being prepped, etc.). I have my personal “patient navigator”, Jennifer, who co-ordinates all the care and all my many doctors’ appointments. Patients are given bespoke printed itineraries for the weeks ahead. The Cancer Centre is also awash in volunteers. There’s easily a couple of dozen at any given time: accompanying patients so they don’t get lost, administering the weekly check ins (on site-specific iPads), bringing free snacks around, driving patients to and from their appointments at no charge, etc. On the psych ward, it’s nearly impossible to figure out where your family member is being housed. We patients have our real names on our doors. No one – not the patients, not the nurses, not the social workers – tend to know for sure what is coming up, even on the day in question. When it comes to treating mental illness at Vic, the old cliché applies: far from well-organized, the right hand doesn’t know… Granted, and finally, I did meet one volunteer while on the Psych Ward. That guest had been a patient on the ward and had returned to lead a group discussion. But that was only one time, for half an hour, over a span of seven weeks.

The informational resources for families are radically different too. Near the lobby/reception area, there’s a cancer library, with comfortable leather chairs and dozens of pamphlets to take home. Our radiation oncologist had written a patient-friendly book on cancer care… and he gave us a free copy! Off-site, there’s a dedicated phone line that operates 24-7, which can connect you directly to an oncology nurse. And, of course, there are recommended websites galore. In fact, after Anita signed up with Wellspring before I started treatment, she got a call a week later to make sure she could navigate their site, and to see whether she had any questions. In sharp contrast, Anita found nothing locally or digitally aimed at caregivers for those with mental health conditions. (For reasons we don’t understand, the focus for caregiver information seems to be squarely on addictions).

One last comparison, not specifically about the hospital, but rather a telling detail about the larger contrasting systems of health care. This one really struck Anita. When I went on a Western-funded sick leave for my Bipolar years back, and then transitioned onto partial long-term disability paid from our insurance company, the rigmarole was awful. So many forms. So many questions. Worst of all, in the end we needed a lawyer’s help, including a (very expensive) report from a third-party psychiatrist, to get Manulife to continue paying me — because the agent’s attitude was that remaining part time solely due to my Bipolar symptoms would be “a lifestyle choice” as opposed to a medical issue. (Yes, that is a quote.) In contrast, I haven’t had to do any paperwork at Western to go on fully paid leave this time. I didn’t require any signatures from any doctors. One quick informal phone call with Human Resources, explaining my diagnosis, and the whole process was done and dusted. I’m pretty sure that Manulife won’t try to wriggle out of longer-term coverage either, on the grounds that my malignant esophageal cancer is a “lifestyle choice”!

What explains the massive differences? It’s not all prejudice and stigma. There’s a genuine and obvious history of successes in treating cancer: one can readily see that all the money directed at research therein has noticeably improved care. Taking my own example, not too many decades ago, my diagnosis would have been a death sentence. Just in the last ten years, the cure rate for my kind of tumour has risen from about 20% to about 40%. And the treatment protocol specific to esophageal adenocarcinoma, which now avoids radiation, was updated in Canada just a few months ago, based on rigorous European clinical trials. All that progress creates an upward spiral: governments and donors think of cancer funding as money well-spent and they continually add to the pot. In contrast, we are still very much in the dark when it comes to treating mental illnesses like Bipolar. There isn’t even consensus on which symptoms go with which diagnoses, let alone agreement about treatments. That can be legitimately off-putting for potential funders. Nonetheless, Anita and I think societal attitudes towards mental health play the most important role. What families want their name associated with treating something as taboo as madness? Who completes treatment on the psych ward and wishes to immediately return there as a proud volunteer? Not even I myself have gone back to Victoria Hospital to lend a hand with psychiatric care, and I’m supposedly enlightened.

Anita and I are toying with writing up an Op-Ed piece on these issues, so we’d value any comments from readers of the blog. What do you all think?