Author: robertstainton

Friends will know from Facebook that I’ve been in pretty rough shape physically these last weeks. My anti-depressant has been leaving me lightheaded for a year and a half. The chemo meds sap all the rest of my strength. Putting them together, I often have a hard time even getting from the bedroom to the bathroom. On a couple of occasions, I’ve fainted and found myself on the floor. Not good.

But my post isn’t about that. It’s about a puzzle of mental wellness.

I thought — my wife Anita thought, my therapists thought, nearly everybody thought — that my Bipolar symptoms would be through the roof during my cancer treatment. We even made a point of including my psychiatrist Dr. D in my cancer team at Victoria Hospital, anticipating that her expertise might be required to understand my non-neurotypical reactions to the stresses of cancer treatment. That hasn’t been happening, however. To the contrary, not just my sadness symptoms, but even my fear symptoms, have been pretty much absent over the last while. Indeed, I would say that it has been years since I have been in such good shape mentally.

It’s inherently interesting to reflect on my paradoxically positive mental state. But there may be a larger pay off: maybe there are lessons here that I can draw on when my symptoms come back, post-cancer?

So, what the heck is going on? I’ve cobbled together a handful of hypotheses.

1) I am always better off mentally when I am “climbing a mountain”. When I have a writing project. When I’m training for a run. When raising the girls. Now, facing cancer itself, and facing its debilitating treatment to boot, make for a great big mountain that I am facing. Maybe fighting cancer, far from worsening my mental health, actually helps?

2) Relatedly, when I am distracted with meaningful activities, my Bipolar symptoms partially subside. Well, there aren’t many things more attention-grabbing than cancer. And there aren’t many things more meaningful than fighting to stay alive.

3) When I was first diagnosed with esophageal cancer, and it remained a very real possibility that the disease would kill me in short order, I found myself reflecting on things that I was likely to miss out on: walking my daughters down the aisle; co-authoring the monograph on history of philosophy of language with my friend Ben; travelling to new destinations with Anita; etc. My focus shifted from the final years of life, which had been a focal point of my fear and sadness, to the next decade or so. Maybe this has made me centre my attention on things worth living for?

4) It is often helpful when I am facing Bipolar symptoms to focus on the present, and on the body. Boy, am I focused on the present and the body these days!

5) Finally, it feels good to feel loved. It feels good to know that folks are wishing me well. And my cancer diagnosis resulted in an outpouring of affection and countless offers of help. Granted, when I’m really depressed, it’s hard to get even such positive things to penetrate: everything seems gray, despite the objective facts. However, I was not deep in a depressive state, so these “goodness facts” may have been able to influence my mood for the better.

There’s a bunch of news to share about both my mental and physical health. I thought I’d share it publicly here.

On the cancer side, my multi-doctor cancer team has concluded that the best course of action for me is not radiation+chemo+surgery after all, but rather a more aggressive bout of intravenous FLOT chemotherapy, then surgery, then more chemo.(See here for plenty more details: https://www.cancerresearchuk.org/about-cancer/treatment/drugs/fluorouracil-leucovorin-oxaliplatin-docetaxel-flot.) This is the new “standard of care” for my kind of tumor, as of some months ago. It’s supported by trials in Europe which suggested that i) chemo before and after surgery is as at least as effective with esophageal cancer as the older protocol, often more so; and unsurprisingly ii) it’s better in the medium and long term not to radiate the heart and the lungs to get the cancer-killing radiation to the esophagus.

The present plan, always up for negotiation, is to have the outpatient FLOT chemo in October and November. In fact, I’m starting tomorrow, Monday the 6th! Then I’ll take about six weeks to allow my body to recover, and do another suite of tests, to see how well the drugs worked. Next up will be surgery early in the New Year. Finally, I will repeat the eight weeks of FLOT — once again at London’s Victoria Hospital, which has a massive cancer clinic — to kill off any rogue cancer cells that might be circulating post-op.

All the doctors and nurses, and many kind friends, have told me that the immediate reaction to this chemotherapy regime is very individualized. Some folks seem to sail through it. Heck, given that patients are fed steroids to keep them feeling positive, I might end up with tons of energy for work! Indeed, I am to be on the lookout for manic symptoms. Other people are completely knocked for a loop.

Long-short, it could be a pretty awful winter physically speaking — but even if it is, the aim now, as I said last time, is to actually cure the damn cancer. To eradicate it entirely. So, that’s worth it.

How am I doing mentally? Mostly, I’ve continued to be paradoxically okay. I would have guessed that my Bipolar symptoms — both on the sadness and the anxiety side — would be through the roof. So far, however, that hasn’t been the case.

Then again, Thursday and Friday were totally filled with fear-symptoms. I needed to have some vaccines, before the chemo impacts my immune system, and those always frighten me. Worse, I needed to have a PICC line inserted on Thursday and then fixed up on Friday. That was terrifying. (‘PICC’ stands for Peripherally Inserted Central Catheter. It’s basically a plastic tube from my right arm to the top of my heart, which allows the medical team to bypass delicate veins when pumping toxic chemo into me over these next months. It freaks me out to have such a thing inside my body.) I felt so scared on Friday that I couldn’t really enjoy the Broken Social Scene concert that Anita and I attended that evening. It wasn’t a “melt down” day, but…

I happened to speak with my psychiatrist, Dr. D, that Friday. I told her that I was trying to be brave about the chemo, and was upset with myself for feeling so afraid. She said two really helpful things. First, she asked what I’d think of someone who was about to start a winter’s worth of cancer treatment, and who wasn’t exhibiting fear at all. Fair point: I’d think that there was something wrong with the person. So, I should be more forgiving to myself. Second, she reminded me of a discussion we’d had ages ago about the Ancient Greek philosopher Aristotle on bravery. Simplifying, he held that bravery is not the absence of fear in the face of danger: that’s more a sign of foolhardiness. No, the brave person is someone who feels the appropriate amount of fear, given the circumstances, yet is undaunted by it: the brave act not without it, but despite feeling fear. And,, Dr. D stressed, that’s exactly what I’m doing.

Let’s start with a recap. I had a scoping procedure done a few weeks back, to find out why I was having trouble swallowing. At the clinic, the doctor found a “mass”, as he put it; he took a biopsy; and he booked me for more tests. The results were scary: I have a malignant tumour in my esophagus, just above my stomach.

More tests were ordered – namely, a PET scan and an MRI – to find out whether the cancer had spread to distal parts of the body. In particular, based on the CT scan and the usual course of the disease, there was a real worry that the adenocarcinoma could already be in my brain, my liver, and/or my lymph nodes. If such metastasis had occurred, it seemed the question was how soon I would die of cancer, not whether I would die of cancer.

The promising news is that the tests came back negative for such spreading. True, it looks like the esophageal cancer, via direct contact, has moved into a small part of the stomach. However, that kind of contagion is much less worrisome than when the cancerous cells disperse through either the blood stream or the lymphatic system. There were no signs of the latter, however.

Given this promising result, the game plan going forward is: 1) Chemotherapy and radiation in the fall, likely in October and November. 2) More tests immediately thereafter, including especially another PET (Positron Emission Tomography) scan, to determine how effective the treatments were – both in shrinking the main tumour, and in killing off any rogue cancer cells circulating elsewhere. 3) Rest and recovery for about six weeks, to get my strength back. The likely final step will be 4) surgery to remove the remaining growths from my lower esophagus and stomach.

I say ‘likely’ because… On the one hand, if I understood the lead doctor correctly yesterday, in 10% of cases, the tumours essentially disappear after chemo/radiation (yippee!). On the other hand, it’s not entirely unheard of that the cancer spreads widely even while chemo/radiation is ongoing, to such a degree that operating becomes pointless.

Long story short: Where not safely out of hot water yet. And I’ve got some tough months ahead of me. Nonetheless, this fundamentally changes the game from “slow the disease down, and keep poor Rob alive a few years longer” to “cure the f***ing cancer altogether”.

A parting thought. This is a blog about my Bipolar Disorder, so I didn’t want to end without addressing how I am doing symptom-wise. It’s really weird: I feel fine. One would think that a person with Bipolar, facing such uncertainty, and so many hurdles immediately ahead, would be both very sad and very afraid. For now, however, that’s just not the case. Instead, I’m feeling grateful that the things I worried about missing out on – my daughters getting married, finishing up some academic projects, doing more fishing trips with friends, travels with Anita, etc., etc. – may still be in the offing after all.

Friends, family and even some near-strangers have kindly asked me how I am doing mentally, given my recent esophageal cancer diagnosis. I thought it would be helpful to address the issue here on the Blog, where everyone can get the update at the same time. The situation is a mite paradoxical.

Let me start with a different topic: my physical health. Truth be told, I feel physically fine. Granted, I do continue to have trouble swallowing. Food gets stuck on the way down, and I need to drink lots of water to move it along. Sometimes that process outright hurts. I’ve also had some acid reflux, apparently because certain “valves” down in my gastrointestinal tract aren’t functioning properly nowadays. Here’s another sign. Doctors keep asking me: “Have you lost lots of weight?” But no, I haven’t – though I haven’t gained weight either, despite indulging in beer and sweets! In sum, physically, I don’t appear unwell at all.

I suspect, of course, that the chemotherapy and radiation will play havoc with my physical well-being soon enough. We’re not there yet, however.

To come to my actual topic, I’m also faring surprisingly well mental-health wise. My depression symptoms continue to be mostly in remission. In particular, I’m keeping my suicidal ideations at bay. I’m sleeping well. I’m not shaking much. Even my fear symptoms come around less frequently of late and aren’t as severe. Long/short: I’m quite well, thanks for asking.

This may all sound quite puzzling. Shouldn’t my Bipolar be acting up really badly? Well, my psychotherapist Lori put her finger on something when she asked last week, “Do you feel relieved at all?” Indeed, I do. A huge aspect of my depression and anxiety has pertained to aging. I have been afraid to get old myself, slowly losing my independence and quality of life. I have been just as afraid of seeing my loved ones get sick, grow old, and die. (Seeing my father enjoy life less and less the last two years of his life certainly didn’t help with my deep sense of foreboding.)

The thing is, if I die of cancer in my sixties, I won’t have to experience those things after all. To come at it another way, I think I’m relieved that I can get “the benefits of suicide” without having to actually commit suicide! Where the main “benefit” is: not having to see others undergo what my father did; and not having to undergo it myself.

I grant that this is not merely paradoxical but also tremendously morbid, and even twisted. Nonetheless, I suspect it may be what is going on in my unconscious psyche.

The other day on Facebook, I wrote that it sometimes feels like I’m living in a Thomas Hardy novel. Here’s the thing about his fiction: every time things start to sort themselves out for the protagonists, another dark tragedy strikes. In the spirt of “openness” that I wrote about last time, I thought I’d share my latest (non-fiction) tragedy.

For a few months now, I’ve been having trouble swallowing. No matter how much I chew it, food gets stuck in my throat, and I need to drink tons of water to get it down. I didn’t see a physician about the issue right away – both because I had a check up scheduled with my family doctor for early July, and because my mother experienced similar symptoms in her old age, and I figured it was the same thing. Post check-up, my GP sent me to have a scope. Last week, on the day of my Thomas Hardy lament, the clinic had found a tumour in my esophagus. I didn’t broadcast the discovery widely, because it was at least possible that the growth was a benign cyst or some such. But it was big and scary news to be sure.

I immediately underwent more tests: blood work to check my liver functioning, biopsy, CT scan. We learned the preliminary results on Thursday the 28^th of August. My official diagnosis as of today is: Esophageal adenocarcinoma. It’s not the worst-case scenario, which would have been that there was cancer throughout my body, and I had mere months to live. It’s by no means the best-case scenario either, however.

The next step is more tests. The CT scan showed a little shadow on my liver and some swelling in the lymph nodes. They are going to do a PET scan (Positron Emission Tomography) to find out whether those are indeed cancerous. If the cells there are consuming sugars very rapidly, that’s bad news. They’ll also do an MRI to check my brain for tumours. Esophageal cancer – I hate that I’m learning to spell that word! – doesn’t typically spread to the brain, but occasionally it does. After that, there will be chemotherapy and radiation at Victoria Hospital in London, Ontario, to shrink the main tumour and to kill off any rogue cells that are trying to get established elsewhere. That will likely take the whole Fall term. They’ll then repeat all the tests and decide what surgery might be appropriate. The operation would come around Christmas time.

And how bad is it? If it has spread nearby, including especially to my liver, I’m at “stage 3”. If it hasn’t, I’m “stage 2”.

How am I reacting, qua Bipolar patient? It’s a mixed bag. In the first 48 hours after the scope, it felt like I was in a bad dream and was going to wake up relieved. No such luck. Since then, on the one hand, I have been pessimistic. Granted, my surgeon told us that – assuming I indeed am merely at “stage 2”, without much spreading – nowadays there’s a 40% cure rate for my kind of cancer. It was only 20% just a few years ago. That sounds like promising news. Unsurprisingly given my mental illness, however, I don’t really believe that I’ll get better. I’m expecting the worst. On the other hand, I’m constantly saying to myself, in the face of such catastrophizing: “Today, don’t put the cart before the horse. Today, you are enjoying life”. And I’m remaining calm. Another mixed bag: I’m grateful that my employer reacted rapidly and found other people to teach my courses; I’m disappointed, though, that I won’t be teaching, as I was really excited about the three classes I was scheduled to do. Keeping busy with a meaningful activity like teaching really makes a difference to my mental well-being. I’m even more disappointed that, because of the planned treatment regime, I likely won’t be able to get away from Canada’s winter this year. All travel plans are presently on hold.

Let’s return to where I began. After half a dozen years of my Bipolar being totally out of control, in May 2024 my medical team finally found a 1960s-era drug that seemed to help, and I returned to work full-time in May 2025. Teaching was going well. I was writing philosophy, even authoring stuff by myself. I was enjoying reading, fishing, traveling, etc. “Things were sorting themselves out”. Along comes the Hardyesque diagnosis: long/short, the statistics for my specific sub-variety of cancer suggest that, most likely, it will eventually kill me, albeit not for quite some time. It feels like Jude the Obscure.

P.S. In the spirit of linguistics and philosophy of language, here’s a concluding thought on cancer and English in the 21^st Century. In our Anglo culture, we have set phrases that we say when a loved one dies: “My condolences” or “I’m so sorry for your loss”. It seems to me that we don’t have such canned wording for when a person reveals that they may be really, really sick. As a result, I’ve noted that plenty of otherwise articulate people are essentially struck dumb when I share my diagnosis. My psychotherapist has stressed to me that, given our linguistic practices in English, this doesn’t mean that they are unfeeling or unconcerned. They’re simply at a loss for words. So, I get it readers: you may not know what to say. That’s okay. Just send good vibes.

I learned a new bit of jargon yesterday when meeting online with folks from the Canadian Mental Health Association: ‘sanism’. I hadn’t heard the term before, but I was able to make a pretty good guess about what it meant. I’ve been pondering the notion since.

I began my pondering by reading the Wikipedia entry on sanism. I found it quite helpful. I’ll crib some highlights from there and then turn to my own thoughts. (See: https://en.wikipedia.org/wiki/Sanism.)

The term is defined as “prejudice, discrimination, and stigma directed at individuals with mental health conditions”. It’s sometimes also called psychophobia, and involves stereotyping people who aren’t “sane”. (I’ll return to that word in a postscript.) Bipolar Disorder is specifically highlighted as one of the conditions where sanism crops up. It involves making insulting comments based on the stereotypes, but also, making discriminatory decisions thereupon – including with respect to hiring, admission to academic programs, immigration, medical treatment, legal decision-making, etc. (“Being of sound mind and body, I…” Why is it okay that “sound mind” is required to make a last will and testament?!)

Sanism tends to show up in people who don’t interact regularly with folks who are “neurologically atypical”. In this respect, “sanism” is just like “ableism”, where the “disability” that is the focal point of injustice involves atypical mental health rather than, say, getting around in a wheelchair. Then again, one finds sanism even among medical professionals who work daily with mental patients. I myself have experienced occasional condescension from doctors and nurses; I feel positive that my fellow sufferers have too.

I’m coming to think that sanism is merely a sub-variety of ableism. And that leads to my own thoughts.

First off, I wonder: Does my Bipolar make me “disabled”? I do tend to check off ‘Yes’ on surveys when asked if I have a “disability”. That’s because Bipolar slows me down when I’m either anxious or depressed, it makes proper concentration and motivation much harder, and it’s chronic, as opposed to a short-term illness. On the other hand, my hypomania has often afforded me tons of energy and creativity. Bipolar can also be an advantage, then. Well, but, isn’t that generally true of so-called “disabilities”? Hmm.

The even harder question is: Is it unjust to make decisions about how to treat me, based on general beliefs about people with Bipolar? It must be granted that there are some positions that I’m just not suited for, because I can’t be sufficiently relied upon: I could never be a Dean of a faculty, I don’t think, nor even Chair of a department. There are also some tasks that I’m not good at when I’m in the midst of a depressive episode, e.g., there have been times when I cannot make decisions that have really important life-consequences for others. On several occasions over the years, that has meant not serving on hiring, tenure, or admissions committees at my university. Yet, recognizing that (sometimes) I’m not ideally suited to some positions/tasks can’t itself be an instance of “sanism”.

Now that my attention has been drawn explicitly to “sanism”, I expect I’ll keep my eyes open for cases where I could carry off the task as well as a non-Bipolar person, but I’m not given the chance to, because of unjustified beliefs about “people like that”.

An interesting postscript: both my wife Anita and my sister-in-law Auditi found the word ‘sanism’ really distasteful. They grant that unjust treatment due to mental health issues is a real phenomenon, of course; but they would prefer that a better name for discrimination of that specific kind could be coined. To them, the very term ‘sanism’ suggests that the relevant disability is being insane, and the latter is now a derogatory word (as is ‘crazy’). Neither could think of a superior label, however. Now that I’ve encountered it online, I’ll have to ask them about ‘psychophobia’ as an alternative.

I’m writing with a quick update for June. There’s good news and bad news.

The good news is that my depression symptoms are pretty much in remission. Two examples. I went 10 whole days early this month without any suicidal ideations. And, though I’m still aware of “salient suicide opportunities” (e.g., stepping in front of a bus), they are not coming daily: true, I had one yesterday, but not the day before.

The bad news is about my fear symptoms. They had mostly disappeared over the winter. However, as I reported back in May, they have come back. As I’ve explained before, what seems to happen is: i) cortisol goes flowing into my brain for no good reason; ii) this creates in my mind the sensation as-of fear; iii) because there’s no external thing that seems to be the cause of the fear, my mind naturally confabulates something frightening to explain why I feel afraid (e.g., I’m afraid because winter is coming and I don’t have a solid plan for surviving it); finally, iv) I end up focused on that target. Now all of a sudden I’m afraid in the more usual way. Ugh.

The mindfulness technique called for here is to “just let the fear be there”. Let me tell you, though, that isn’t easy, because feeling afraid is really very unpleasant. Indeed, evolution made our feeling-of-fear terrifically uncomfortable so that we would pay attention to our environment when it shows up, and try to avoid whatever caused the feeling. It’s just like pain in that regard. Ignoring fear sensations is thus hard to pull off, as it goes against our inborn nature.

Several weeks ago, my psychotherapist Lori proposed a practice to implement when my fear symptoms pop up out of the blue. The two-fold task she assigned me was, first, to see if there’s any pattern at all: maybe it’s not wholly random, wholly a matter of misdirected brain chemistry; second, to pay close attention to where in my body I am feeling the fear. Some of usual suspects, for instance, are tightness in my checks, clutching the toes of my left foot, and increased heart rate. (Dear Bipolar Brain: Why my left foot? That’s so random.)

Her suggested practice has yielded two results. On the one hand, moving my attention away from the fear sensation in my mind, and towards the fear symptoms in my body, seems to distract me, and really helps overcome the fear. On the other hand, I have indeed noticed one tiny piece of a pattern: when I’m putting on my running shoes, when I’m planning a run, even when I just think about running, the fear symptoms tend to show up. To expand on that last point, it’s like I am scared because I can’t run as fast or as far anymore. I’m terrified of trying to run and not succeeding. In light of that, I’m trying to make my running plans purposely less demanding. These days, I run only three kilometers. And, instead of 10 minutes running and then a one-minute walk break, I’m taking a walk break every six minutes, as I slowly rebuild my stamina. In brief, I’m compassionately making the task easier on myself. The hope is that I’ll thereby become less afraid of failure.

The overarching good news, and the crucial point, is this: the unpleasant fear sensations notwithstanding, I am coping well with being full-time at work. I have no plans to turn back!

My fear symptoms had basically been in full remission for months. What a welcome relief that was. Unfortunately, they came back about a number of weeks ago.

The best I can describe things, it’s like a flood of fear hormones (e.g., cortisol) rushes into my brain for no good reason. This neurochemical change provokes the sensation-as-of-fear: the feeling you have, for instance, when you walk down a dark, deserted alley, expecting someone to jump out at you. Once I “feel afraid”, albeit in that peculiar fashion, I naturally look around for something that I’m afraid of. After all, normally there is some external trigger of those hormones. All too often, I am able to confabulate something: “I feel afraid because I’ll be going running” or “I feel afraid because I’m aging”. Worst of all, because of the cortisol, I am back to experiencing meta-fear: I worry that the fear symptoms are all coming back, that they will get more severe, etc., and that ratchets up how scared I feel. And that latter fear isn’t merely physiological.

Things aren’t so bad yet that I need to scale back my work hours, or anything like that. At this point, I am delighted to report that I’m still okay to be working full time. But, in addition to the feelings being no fun, they do sap my energy and they make it hard to concentrate.

My Dialectical Behavioral therapist has me trying to track when the fear-like feelings show up. So far, I haven’t been able to identify any correlation; it seems pretty random. She also wants me to pay attention to what’s going on in my body when the fear strikes: where do I feel things, what bodily changes are happening? This serves twin purposes. Mindful awareness of one’s own body helps take the fear-sensations away. What’s more, such somatic vigilance may eventually help me to identify a cause. Is there anything bodily in common, even if the external circumstances are highly variable?

Wish me luck!

Lots of folks tell me that I’m strong. They mean well; it’s kind and supportive of them to say that; but I don’t really buy it. On the contrary, I’m able to embrace my weaknesses. What I do accept is that I am determined. In particular, I don’t give in easily to my mental illness. For instance, I have just come in from a run; I went out on my own despite feeling really scared; that’s just the usual course of events for me. (Yeah me!)

Intriguingly, that determination of mine isn’t uniformly helpful. Occasionally, it’s my foe. I experienced an example on Sunday and decided to share it here.

The background: I was tasked with putting together a nomination document for a very deserving doctoral dissertation which I co-supervised. (Shout out to Dr. Andrew Tweedie for an amazing piece of work!) Western can only forward on one nominee to the national-level; and only one student Canada-wide will win the award. So, it’s a longshot. I should also mention that the dossier isn’t due until mid-May. Both facts will turn out to be relevant.

My task was to write a cover letter, and then fuse it with half a dozen other documents which had been submitted by various people: an Abstract composed by the nominee Andrew; recommendation letters from his External Examiner and the other co-supervisor; etc. Those documents arrived in a range of formats (Word, pdf), they contained letter head and signatures, and so on. Still, combining it all seemed like an easy task. Unfortunately, I kept running into little problems. The formatting would randomly change. The pagination would disappear. I couldn’t insert certain files despite putting everything on my desktop. Over a period of about half an hour, I encountered one petit frustration after another, until I was in an absolutely tizzy. It was so frustrating: here I was putting in so much effort, despite the fact that the student was very unlikely to win the award.

The resulting state was very like that of a toddler throwing a tantrum. Anita tried to lend a hand, but I was beyond help by that time. (She told me multiple times, ‘Calm down’, but I just couldn’t. Indeed, hearing her say that just annoyed me further. I was inconsolable.)

Here is my thought in retrospect: What I should have done, at about the ten-minute mark, was to take a break – go do a meditation or a run, let myself settle down, get some distance from the task. After all, I had two weeks left before the compound document needed to be uploaded. Yet I felt compelled to keep going. I stubbornly insisted on getting the darn letter finished. I wouldn’t let myself be “defeated”: not when I was so close. Here then is a case where my determination served me ill.

It matters that I find a way to avoid this kind of thing. To begin with, the incident ruined the whole rest of my day. I fell into a self-doubt spiral: “What’s wrong with me that I can’t do this simple task? I must not be so competent after all. I’m getting sick again.” That brought in its train despairing thoughts of suicide. I wasn’t myself until the next morning. More importantly, I can’t be throwing grown up tantrums when I am on my own somewhere, with important tasks to complete urgently. The experience was no fun here at home, with Anita by my side, but it would have been disastrous if it had occurred, say, while I was at the Pacific APA on my own.

The trick going forward will be to distinguish cases where determination helps me get better, and cases where that same stubbornness is simply foolhardy.