The Incidental Economist

A friend asked me if I had learned anything about how to live with cancer. I laughed — the “live with” part is still in play — but I’ll try to give a helpful answer.

That answer is: Even when you are very sick, do your best to maintain your health by getting or staying fit.

I need to apologize for that answer because it may be out of reach for many readers. I can focus on fitness because more important things have gone well for me:

1. Connection. I have spent lots of time with my wife, children, and friends. Sadly, my kids and many of my friends live in the States, and the pandemic has closed the border. So I haven’t been in the same room with them in a year. However, being sick has freed large blocks of time. That gift of time was generously matched by my friends and family, who have spent hours with me on Zoom.
2. Religion. We are Christians. For better or worse, cancer might scare me a bit less than you expect it to. Secular readers: Go ahead and deduct 15 points from your estimate of my IQ. I don’t mind.
3. Canada. My out-of-pocket costs for my care have been about $100, for co-pays on an ambulance ride and some prescriptions for generic hydromorphone (trade name Dilaudid, a pain medication). Of course, my health care was not free. I prepaid through my taxes at a rate that reflected my income. The Canadian system gave me access to advanced cancer care without the slightest fear that it would bankrupt my family. Likewise, my employer immediately granted me months of paid disability leave. God save the Queen.

Without these foundations, I would surely have been overwhelmed. With them, I have maintained energy, mood, and purpose.

A few years ago, we lost a good friend to ovarian cancer that disseminated to her liver. She maintained her energy, dignity, and hospitality throughout the years of her illness. Part of her secret for thriving despite surgeries and chemotherapy was staying fit and upright through long daily walks with her friends and a standard poodle, which she logged on her Fitbit. Witnessing her exemplary life helped prepare us for my cancer.

I won’t cure my cancer through exercise (or diet, meditation, or prayer); this is how I live with it. I’m not ‘fighting’ cancer; that’s the Cancer Centre’s job. My job is to stay mobile, attend to my daily needs, care for those I love, write a bit, and prevent depression. Fitness is a means to those ends.

You get fit by developing a workout discipline. You don’t get disciplined by gritting your teeth, or at least not just by doing that. Workout discipline comes from joining a team, getting good coaching, evolving a program, and accurately monitoring your effort. Instead of a standard poodle and a Fitbit, I have a King Shepherd puppy and Peloton.

My workout partner, Mika (pronounced ‘Mee Ka’).

Mika joined our family in late June, just three days before I was diagnosed. Dogs are ideal teammates. The anthropologist Pat Shipman argues that the domestication of wolves to collaborate on hunts for large mammals enabled homo sapiens to outcompete the neanderthals for the apex predator niche in the Pleistocene. Mika loves to be with me, and she never gets bored. She unfailingly prompts me at walk time. She has a sweet disposition but can destroy anything if she doesn’t get multiple daily walks. Get a dog and, if you can, get a good trainer to help raise her.

The Peloton bike arrived on October 12, about a month after the end of radiation therapy but perhaps only a week after the physical experience’s nadir (radiation toxicity accumulates for weeks past your last session).

Me, a week before the end of radiation therapy. I have lost 14 kg (30 lbs) since it started.

The bike is overpriced, but what makes it superior to the standard gym stationary bike is the touchscreen display of your pedalling cadence, resistance, power (the watts/joules you are generating), and their averages. Your workout data are saved to the cloud, maintained in an easily accessible history, with lots of graphs and notifications to track your progress. Every fitness app does this kind of thing, but Peloton does it better than anything else I’ve tried.

Cloud-connected device for capturing exertion data and accessing a social network. Also: a stationary bike.

The Peloton brand is online spin classes, but that’s not the best way to think about it. Peloton has a touchscreen-equipped treadmill, as well as outdoor running, strength training, yoga, pilates, barre, stretching, and meditation classes that you can access from your phone or tablet. The instructors encourage you to cross-train, which is crucial. Trust me: if cycling is all you do, you will injure yourself. There is a huge library of recorded modular workouts of 5 to 90 minutes that you can do any time. Use these like Lego blocks to build a weekly fitness program. That sounds intimidating. However, although the instructors radiate spin class glamour, many of them are former physical therapists or strength/endurance coaches. Start by choosing workouts based on the music. You’ll absorb cross-training ideas from the instructors’ monologues and the prompts that follow the completion of a workout. What makes all this work is the pricing. You pay one monthly fee rather than paying by the class, so there is no disincentive to doing, for example, a 5-minute guided stretch after each ride.

Peloton has an active social network. The touchscreen has a camera, so if you do a live class, you can add a video chat with friends on the same ride. I haven’t explored this much, but I’d like to. I used to be an age group triathlete, and group rides were the core of my training (shout out to the Columbus Triathlon Club!).

Perhaps most importantly, the Peloton instructors supply good coaching at internet scale. I recommend Matt Wilpers and his PowerZone training,* but you can pursue lots of other tracks. PowerZone training gives you a method to tailor your workouts to your current fitness. If you are so sick that you can barely turn the pedals, that’s fine. PowerZone reconfigures your touchscreen to rescale the output wattage your pedals are generating to a scale anchored by 0 = no pedal rotation to 7 = a level of exertion that you can maintain for just seconds. The program has a procedure to set these zones to what you can do. Then, when you do a PowerZone class, the instructor calls out a zone, rather than an output wattage  (or cadence or resistance) that might be impossible. This gives you a workout that is feasible — and, in measured doses, demanding — for you. The PowerZone workouts — interval training, in spin class drag — give you a path to build those capabilities.

Matt Wilpers. My cycling coach, and maybe 1 million other people’s too.

Effective coaching at internet scale is an amazing accomplishment. It is what wellness programs promise but fail to deliver. Of course, Peloton — and dog ownership — succeed mostly because the people who commit to them already love dogs and want to be fit. Perhaps this selection effect is the entire story. Who cares? Select yourself in. Fitness will help you live with and recover from cancer.

*Matt Wilpers didn’t invent power zones. Professional cyclists and triathletes all train this way. What he has done is figure out how to teach and support this style of technical, instrumented cycling training for a mass audience.

@Bill_Gardner

To read the Cancer Posts from the start, please begin here.

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In December, I got a computerized tomography (CT) scan to determine whether the radiation treatment I had received had destroyed the tumour in my throat. The report from that scan misinformed me that I now had not just a throat tumour but also a lung tumour. This was an error: a radiologist didn’t proofread his dictated report before he saved it to my electronic health record. When contacted he corrected the report: the CT scan showed no evidence of lung cancer. The CT scan showed, however, that there were residual tumour masses in my throat and in the lymph nodes in my neck. My radiation oncologist thought that these tumours were likely dead, but you can’t confirm this from a CT scan. So he ordered a positron emission tomography (PET) scan.

You might imagine that when your physician writes an order for a diagnostic procedure, you get the procedure. This has not been my experience. When I first developed cancer symptoms, my family doctor ordered some imaging. All this got me was a place on a waitlist. I was only diagnosed after I went to the Emergency Department, coughing blood. Similarly, weeks passed without a response from Nuclear Medicine, the people who do PET scans. I stopped by their office one afternoon to ask why. No one was there and the person in the next office said that everyone left at 3:30. Finally, I got someone on the phone who was able to find an opening due to a cancellation.

I wonder what Nuclear Medicine did with my oncologist’s order. I imagine a meeting like the one in the last scene of Raiders of the Lost Ark.

Indy and Dr. Brody are trying to convey to a bureaucrat the urgency of researching the Ark. The bureaucrat tells Indy that “Top men” are working on it.

Indy (acid skepticism); Who?

Bureaucrat: Top. Men.

In reality, the crate containing the Ark has been lost in the warehouse. Perhaps my oncologist’s order was stacked on top of that crate.

In any event, on February 26th I got the procedure. In a PET scan, you are first injected with a radioactive sugar solution. Cells eat sugar and in doing so they absorb the radioactive material. Cancer cells have crazy high metabolisms and eat voraciously. This means that they pick up more radiation than other cells. In a PET scan, therefore, cancer cells glow brightly in the image against the background of healthy cells.

I do not see that image; it goes to a nuclear medicine fellow, who interprets it and writes a report. But in the new world of electronic health records open to patients, I was the first person on my care team to read the report.

What my PET scan showed was that a portion of my throat tumour has survived my radiation treatment. Similarly, the metastatic lymph nodes in my neck still have active cancerous cells.

Me: Uh. Oh.

I wrote my radiation oncologist with QUESTIONS. Impressively, he got back to me in less than 24 hours, and I’d summarize his reaction as, “Our first attempt to treat this didn’t work.”

So what now?

Radiation is no longer an option: apparently, I’ve had all I can tolerate. My radiation oncologist has referred me back to the surgeon who biopsied me back in July. The journey isn’t over. I will let you know what my options are after I have spoken to him.

The PET scan was BAD NEWS, but it was far from the WORST NEWS.* Surgery can work in these circumstances. I feel healthy, I’m hopeful, and I am prepared for whatever comes next. Writing about this experience is helping me get through it. Unfortunately, I still have more to say about being a cancer patient in the COVID pandemic. But there it is.

*There was actually GOOD NEWS, which was that the scan revealed no new metastases. Or maybe goodish news, because there are limits to what you can see in a PET scan. The problem is that, like case numbers in epidemics, cell counts in tumours grow exponentially. Suppose that a cell from my original tumours had escaped into my lymphatic system and migrated to a new site. At the new site, it might start growing, with cell counts doubling every so often. While those counts are small, the new tumour would be too small to register in a PET scan. By the time it became large enough to be imaged, each doubling would manifest as a rapid, aggressive expansion. In short, the absence of evidence of new metastases in a PET scan is only weak evidence that they are absent.

@Bill_Gardner

To read the Cancer Posts from the start, please begin here. The next Cancer Journal is here.

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Dr. Bryan Schneider and Dr. Milan Radovich return to the podcast to break down the latest developments in personalized genomic medicine, share findings from their triple negative breast cancer research, and talk about their current and upcoming breast cancer studies, including EAZ171 and PERSEVERE.

This episode of the Healthcare Triage podcast is sponsored by Indiana University School of Medicine whose mission is to advance health in the state of Indiana and beyond by promoting innovation and excellence in education, research and patient care.

IU School of Medicine is leading Indiana University’s first grand challenge, the Precision Health Initiative, with bold goals to cure multiple myeloma, triple negative breast cancer and childhood sarcoma and prevent type 2 diabetes and Alzheimer’s disease.

Available wherever you get your podcasts! Including iTunes 

@DrTiff_PhD

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The Cancer Journal is the story of my experience as a throat cancer patient during the COVID-19 pandemic. I finished my radiation sessions back on September 18, 2021. Well, I hear you ask, are you cured?

Before treatment started, I had imagined that I would get a regular computerized tomography (CT) scan. But my first follow-up CT was scheduled for December 21, 2020, almost 10 weeks after my last radiation session. It turns out that it is not as easy as you’d think to determine whether radiation is succeeding in destroying a tumour. The reason is that radiation traumatizes your flesh, leaving it burned and swollen. It’s meant to kill the tumour while not quite killing the tissue surrounding it. The problem is that the swelling of the burned tissue makes CT images difficult to read. So you have to wait for the flesh to cool before you take the image.

December 21 came, finally, and I had the image taken. I didn’t hear anything for a considerable time. But, first, it was the holidays, and second, COVID has put exceptional stress on provincial hospitals. So I get it: this is not a time when you can expect quick responses.

On January 11, the CT report appeared in MyChart, the patient portal to the hospital’s electronic health record (EHR) system.

The login page for MyChart, the patient portal to the EHR at my hospital.

CT SCAN OF THE NECK

CLINICAL HISTORY: base of tongue cancer post XRT [x-ray therapy] response…

COMPARISON: Compared to prior CT dated July 3, 2020.

TECHNIQUE: 2.5 mm helical sections through the neck with administration of intravenous contrast.

FINDINGS: There is [sic] extensive posttreatment changes noted in the neck soft tissue. There is almost complete resolution of the primary right lung base tumor with small residual hyperdense area measuring 10 x 12 mm…

Wait a freaking minute. Let’s read that again.

There is almost complete resolution of the primary right lung base tumor…

I’ve been in treatment for throat cancer. Who said anything about a LUNG tumour? But the report referred twice to a lung tumour.

(By the way, the above was how I reacted to this report. My wife’s reaction — she is a physician — triggered seismographs across Eastern Canada. In a few years, alien astrophysicists on nearby stars will be perplexed by tremors in the fabric of space-time that register in their gravitational wave detectors.)

I wrote and called my oncologist. No response. Eventually, I called Patient Relations, the people who used to be called Patient Advocates. They got hold of the radiologist who had read the image. He was, the patient advocate told me, deeply sorry. He saw a residual tumour mass in my tongue and throat. Apparently, the speech recognition application that transcribed his dictated report misheard ‘lung’ for ‘tongue.’ I do not have a lung tumour.

A day later, I got a call from my oncologist. He, too, apologized. When read correctly, the CT was mostly positive, although it was not clear enough to rule out residual cancer. He promised to schedule a positron emission tomography (PET) scan to understand better whether the remaining tumour is dead, or alive and still dangerous.

What can we learn from this misadventure? It confirmed my impression that the health care system has yet to establish an effective way for caregivers and patients to communicate except through in-person, video, or telephonic visits. I’ve not been successful in getting questions answered using the Cancer Centre’s Patient Support Line. And so far, MyChart has mostly wasted my time or misled me.

However, global criticisms like the ones I just made in the last paragraph aren’t that helpful. Part of the process of building an effective caregiver-patient communication system is identifying specific problems and fixing them. How do we do this?

First, let’s acknowledge that the mistranscription of my CT report was a significant error. It stressed the hell out of us and, worse, it might have misled a caregiver who needed to learn about my health from my EHR.

But errors happen, and a ‘lung’ for ‘tongue’ confusion is understandable. One can assume that continued progress in speech recognition will reduce these errors. But we have to expect errors and given that, what processes can be put in place to catch them?

There’s a literature on transcription errors in radiologic reports and an even larger one concerning medication errors in prescriptions. I hope that these literatures describe ways to prevent and correct errors that do not force radiologists or oncologists to spend additional time on documentation. Nor do I think that hiring scores of human proofreaders is a solution that would scale.

The long-term solution may be an automated system that can efficiently screen medical communications for logical coherence and consistency with data in the EHR. I’m struck that when I read my CT report, I saw immediately that the reference to ‘lung’ was anomalous. If a layperson can see an anomaly, could we train an AI to catch one? Don’t dismiss the thought. I certainly don’t want a robot that autocorrects CT reports. But I do want one that can register surprise when something unexpected happens.

To read my Cancer Posts from the start, please begin here.

@Bill_Gardner

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Because The Incidental Economist is widely read, I am frequently interviewed by Canadian journalists (radio, TV, and print). I want to talk about provincial and national health policy. But the interviewer always wants me to say how it feels to have cancer during the COVID pandemic.

Well, it varies. When I was first diagnosed and I learned about my treatment options, it was clear that I had a choice of ordeals. I’ve done ordeals: marathon, triathlon, dissertation. So when the courses of treatment were presented to me, I knew I could do them, and I set about working through the details.

And when I finished radiation therapy, I was elated. Yes, I had lost 30 lbs, my throat was on fire, my neck was swollen with lymphedema, and I was still feeding through a tube. But I was done, over the finish line, and it was going to get better from here. I began planning a recovery — reconstructing my daily writing routine, my low carb/high protein diet, and my weekly yoga/strength/cycling routine. It was my Build Back Better plan.

Those programs have lasted, more or less. I am recovering, I am writing, I’m eating well, and I am exercising. But Build Back Better isn’t how life feels.

Mark Rothko, Untitled, 1969.

On the one hand, there is a depth of fatigue in life that is new to me. There is a blackness, a singularity of exhaustion in my bone marrow, and it laughs at my self-help routines. It will take months of recovery to clear it if it ever entirely goes away.

On the other hand, cognitively and emotionally, I’m not at all sure that things will get better. Cancer brings the reality of death up close and personal.

Albrecht Dürer. The Knight, Death, and the Devil. 1513.

When I chose my treatment plan, the deal was that I had a 75% chance of surviving 5 years. Here’s how I understand this: there are 3 chances in 4 that the radiation has destroyed my tumour. If that’s what happened, I now have more or less the longevity of other 67-year-old males. Conversely, there is one chance in four that cancer has disseminated from my throat. Then, my apparently successful radiation therapy will be followed by new cancer. I’ve been through this with friends, and it has killed them.

Pieter Bruegel the Elder, The Triumph of Death. 1562.

Then, add COVID. I’m now in the intersection of two high-risk categories. I disinfect whenever I see a dispenser. I wear a mask whenever I know that I’ll meet people out of the house. But I’m not perfect, and someday, I’m likely to walk through a cloud of droplets. What happens then?

Albrecht Dürer. Melancolia I. 1514.

I don’t obsess about death. I have a purely depressive personality, just the emotional blue notes, without concomitant anxiety. I don’t experience much fear, including fear of death—nevertheless, the actuarial odds condition all my choices. I am always aware that time may be limited.

Vincent Van Gogh. Wheatfield with Crows. 1890.

If not for COVID, we would travel to be with our children in the US. But the border is closed. So the choice is work and that’s fine. What cancer and COVID press me to ask is, “what do I still have to say that might make a difference?”

To read the Cancer Posts from the start, please begin here. The next cancer post is here.

@Bill_Gardner

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Last Monday, I spent the day in a hospital — specifically, an Emergency Department (ED) — dealing with an episode of atrial fibrillation. I’ll explain how this was connected to my cancer, but my principal goal is to call attention to a flaw in the health care I experienced during this episode: ‘Hallway medicine.’ It’s a chronic problem in my home province of Ontario.

The background is that I am recovering from radiation treatment of a tumour in my throat. That radiation has — I hope — destroyed the tumour. Whether or not the tumour is gone, the radiation charred my throat, making it painful to swallow. The difficulty in swallowing makes it challenging to stay well-hydrated.

Dehydration wouldn’t be a big deal, except that I was born with low blood pressure and a slow heart rate (bradycardia). Endurance sports lowered my heart rate still further. During my triathlon days, I once recorded a resting heart rate of 35 beats per minute. (If I got any chiller, I’d be dead.) Unfortunately, I also have a congenital arrhythmia. The neural circuitry inside my atrium — which initiates a heartbeat — somehow got laid out in a non-standard way. (“It’s the same goofy wiring he has inside his head,” sez my physician wife.) This means that I occasionally have random delays — skipped beats — in my heart’s rhythm. But if an already slow heart skips a beat, bad things can happen. It’s as if my autonomic nervous system panics: is this chump’s heart beating at all? This triggers a state of atrial fibrillation, that is, a surge to a dangerously high heart rate (e.g., 160 bpm). Very rapid and irregular heartbeats do not pump blood efficiently. Blood pressure can drop, my brain gets deprived of oxygen, and I pass out. I have spent too much time in heart hospitals, where cardiologists have worked to control this.

OK, that’s complicated, but I promise you it will connect back to my cancer-related dehydration. To paraphrase Derrida, if human biology were simple, word would have gotten around. Now back to my story.

View from inside the ambulance. My legs are under the yellow blanket and I am looking back at the windows on the ambulance’s rear doors.

At 1:00 AM last Sunday, I woke up to use the washroom (as we say in Canada). I stood up from my bed and promptly passed out, crashing to the floor. At 10:00 AM, it happened again. My blood pressure was so low that we couldn’t get a reading on our home blood pressure cuff. I couldn’t stand without passing out; I couldn’t even get downstairs to our car so that my wife could take me to the hospital. I had to be taken by ambulance. On the way, the paramedics confirmed what we suspected: I was, for the first time in many months, experiencing atrial fibrillation.

The ED garage. Cases transported by ambulance are triaged here.

We arrived at the Ottawa Hospital ED. The ambulance drove into a garage, where I was transferred to a bed, efficiently triaged, and the bed was rolled into an alcove in the ED. I was hooked to heart and blood pressure monitors and was rocking 160 bpm, with a blood pressure of roughly 90/60. Doctors and nurses took my history. Ottawa is a small world: the attending physician was Dr. Z, the younger brother of my family physician. My hypothesis was that I had gotten dehydrated. The reduced volume of liquid had reduced my blood pressure, increasing my risk of atrial fibrillation. Dr. Z the Younger agreed, and ordered some blood work to check whether my electrolytes were normal. He also ordered an IV unit of saline solution. It took 90 minutes for the IV to actually happen, but once it did, my heart rate dropped to a steady 60 bpm. That is, I had converted from atrial fibrillation back to normal heart pacing.

In the ED proper. I am in a hospital bed, in an alcove off the hallway.

To this point, my care had been exemplary. However, the ED was clearly under substantial stress. Staff were constantly having to stop and disinfect things. Every bed was filled, and I am sure there was a crowd in the waiting room. At this point, the only reason to keep me was to make sure there were no problems in the blood work. So while we waited for those results to come back, they wheeled me out of the alcove and parked my bed in the ED hallway. You can see where I was in the Figure below.

Schematic plan of the ED. My bed is in the hallway, in the lower left-hand corner.

What’s wrong with receiving health care in a hospital hallway? First, someone being cared for in a non-standard location is more likely to get substandard care, if only because it is easy for staff to lose track of them. This wasn’t a great risk for me. I was lucid, no longer in atrial fibrillation, and I was in full view of the nursing station, so I could get care quickly if I needed it. However, it is impossible to rest in a hallway. There was a constant flow of staff and patients around me, so despite having been up most of the night, I couldn’t sleep. Finally, I had no privacy when I spoke with Dr. Z (although, as you can tell, I am not shy about discussing my health problems).

The deeply troubling problem, however, was that I could hear everything in the rooms I was near. My presence in the hallway violated the privacy of the patients in rooms A through E. I won’t provide details, but things happened that I would not have wanted a stranger to overhear.

Why does Ontario have a problem with hallway medicine? The occupancy rates for Ontario hospitals are often near or even above 100%, where occupancy > 100% means that patients are on gurneys in the hall. The problem precedes COVID-19. The provincial government wrote a 2019 report that candidly admits that hospital patients are frequently cared for in hallways. This happens because some areas in the province are served by hospitals with too few beds, either in the ED itself or in the wards where patients ought to be transferred from the ED.

But why hasn’t the province opened more beds? There aren’t more beds because hospital care in Canada costs a lot more than, say Denmark (33% more in 2016, according to the OECD).

One reason is that Denmark, like many other OECD countries, is small, compact, and densely populated. Put up a few, well-spaced hospitals, and every Dane will have a place nearby. Ontario is substantially bigger than Texas. Although most Ontarians live in or near big cities, there are also large, sparsely populated rural areas. To the north, there are vast boreal forests that become tundra where the province hits Hudson’s Bay. These remote areas are almost — but not quite — empty. There are tiny settlements up there, many of them with concentrated poverty and health problems.

Supplying tertiary health care services to rural and remote areas is costly. If you build community hospitals, many of the beds and operating rooms will be empty much of the time. In sparsely-populated areas, the number of people who live close enough to drive to the hospital is simply too small. Nevertheless, unfilled beds and unused ORs still need to be staffed, which is inefficient. But if you don’t build community hospitals, you will spend money instead on long ambulance transports, often by air.

No provincial policy can change the geography of Ontario. So why don’t Ontarians bite the bullet, spend more, and get patients out of the hallways? Perhaps we should. After all, Canada spends considerably less per capita on health care than the US does. However, although Canada spends less on health care than the US, it spends more on other social programs like parental leaves, child care subsidies, education, and unemployment insurance. There isn’t public support for spending less on those services. Moreover, you could argue that spending more on social services and less on health care is a reason why Canadians are happier, better educated, and live longer than Americans.

So if Ontarians do not want to transfer resources from schools to hospitals, opening more hospital beds will require new public expenditures and higher taxes. Surprise: they do not want to do this. Perhaps this is short-sighted; everyone is counting on it being someone else whose hospital bed gets parked in the hallway. Or maybe it is wise: we have a progressive tax system in which high earners pay high marginal rates (DM me on Twitter for details). If those rates rose too much, highly-skilled Ontarians might look for jobs in Arizona or Florida. There aren’t easy answers here.

To read the Cancer Posts from the start, please begin here. The next cancer post is here.

@Bill_Gardner

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I spent yesterday in the emergency department of the Ottawa hospital. I was being treated for atrial fibrillation — the uncontrolled, rapid beating of my heart — and episodes of syncope (fainting) that left me unable to stand. These events were connected to my cancer treatment, and I will explain how in another post. There’s little to do in a hospital bed, so I spent a lot of time reading news, most of which was devoted to President Trump’s hospitalization for COVID-19. There were many references to the President “fighting” COVID. In this post, I want to comment on how you fight a disease.

My view from an observation bed in an Emergency Department.

I have been grateful for many messages of support during my time with cancer. Some writers have cheered me in my ‘fight’, and one exhorted me to “whip cancer’s ass.” Patients, in this trope, are in combat with the disease. I have mixed feelings about this.

On the one hand, being a cancer patient is a struggle. Your life doesn’t stop: you have to maintain everyday self-care habits and close emotional connections with others. You must keep your life going in the face of exhaustion, pain, and, for many, acute nausea. All this tests your character, and if framing your struggle as combat helps you, do it.

On the other hand, fighting to preserve your life isn’t the same as fighting the disease. Surgery, radiation, or chemotherapy destroy tumours, not your willpower. Similarly, the President can tweet as aggressively as he wants, the coronavirus won’t be reading it. Although patient self-care is vital in healing, we do not have direct voluntary control over our bodies’ resistance to disease processes. We have to adapt to diseases, endure the treatments as best we can, and hope for the best.

Moreover, there is an effective way to fight disease. It isn’t what an individual patient does in a hospital bed. It’s what we do, collectively, through public health. We can fight oropharyngeal squamous cell carcinoma — my cancer — by getting every youth vaccinated for human papillomavirus and getting people to stop using tobacco products. We can fight COVID by wearing masks, keeping an appropriate distance, supplying adequate personal protective equipment to long term care facilities, implementing testing, contact tracing, and a host of other activities.

And, finally, something is enraging about the talk about Trump fighting COVID. It was his job to lead the public health response to the coronavirus. He gave up that fight.*

*Is it wrong to criticize someone with a disease that might kill them? No. My immediate response to learning that the President was ill was to pray for his recovery. I am a practicing Christian, and my prayer was sincere. Read the Gospels: you will discover that what Jesus mostly did was teach and heal. He healed everyone he encountered, regardless of their moral status within their communities. I have also studied with Buddhist teachers and received the Bodhisattva Vow from my lama. According to the Tibetans, the greatest bodhisattva is Chenrezig, and I had the unmerited fortune to receive the Chenrezig empowerment from His Holiness the Dalai Lama. A bodhisattva works to free all sentient beings from suffering. In both of these traditions, everyone means everyone.

Chenrezig, the patron Bodhisattva of Tibet.

Likewise, from the viewpoint of professional ethics.  I am a professor of epidemiology. Epidemiologists value everyone’s well-being and suffering equally in assessing population health. However, I first trained as a psychologist. Like other health care workers, psychologists are committed to caring for everyone. We make no judgments about whether people deserve care. Again, everyone means everyone.

Therefore, I sincerely wish President Trump full recovery of health. Nevertheless, he is morally responsible for the suffering he has caused, and it is just to hold him accountable for this. This has nothing to do with whether he should suffer from COVID-19. Because health care isn’t just for the righteous, there is no inconsistency in praying for his health and well-being.

To read the Cancer Posts from the start, please begin here. The next cancer post is here.

@Bill_Gardner

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In my last post, I described what radiation therapy for oropharyngeal squamous cell carcinoma is like. In brief: The purpose of radiation is to destroy my tumour while just-about-but-not-quite killing the healthy tissue surrounding it. As I described, I’ve had severe throat pain, including great difficulty swallowing. As a consequence, I’ve lost 30 pounds.

So, early in September, I had a nasogastric (NG) feeding tube inserted.

My NG tube. I have tucked the end that connects to the feeding bag under my shirt.

This allowed me to put units of concentrated nutritional products — I won’t dignify them with the term ‘food’ — into a bag on an IV pole. I dilute the product with water and, in the morning, with brewed coffee. The bag drips the product into my NG tube, which carries it into my nose, through my sinuses, past my inflamed throat, and empties directly in my stomach. The tube was moderately painful to insert, and you spend much of your day tethered to an IV pole. But it solved my dehydration and halted my weight loss, so it’s a win.

The great news is that I finished the last of my 35 radiation treatments on September 18th. The rigours of therapy aren’t over: my throat’s inflammation grew more acute in the week following the end of treatment, the way a sunburn can feel worse the next day. Nevertheless, I’m sleeping better, and my energy has improved.

A consultation with my home health care aide, Mika the Alaskan Shepherd.

Or so things stood, until this weekend. On Sunday, Mika — my 5 & 1/2-month-old King Shepherd/Malamute mix — careened into my lap while I was working on the couch. She weighs 24 kg — 50 freaking lbs — and she hip-checked my feeding tube, which yanked it out. Home health care is an adventure. Luckily, I am already sufficiently recovered that I can drink my coffee and Ensure™ cocktails, more or less, so we haven’t reinserted it.

Otherwise, I’m sleeping late, and after I get up, I mostly nap. Oropharyngeal cancer survivors tell me that this will continue for weeks. I won’t be scanned again for a few months, so I don’t know whether the treatment worked. I’m just grateful that it’s over.

I deeply appreciate all the messages of support, particularly from fellow cancer patients. Please keep reading for just a couple more posts. I want to reflect on how cancer changed me, psychologically and spiritually. And I will do one final post about how the COVID epidemic has affected the health care system, as seen by a cancer patient.

To read the Cancer Posts from the start, please begin here. The next cancer post is here.

@Bill_Gardner

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To remind you: I am undergoing radiation treatment for an oropharyngeal squamous cell carcinoma. I have now completed 26 radiation sessions, and there are just 9 more to go. Treatment will end on Friday, September 18th. I am going to get through this, but it is not enjoyable. Here are some notes on what it has been like.

Radiation works by doing more damage to the tumour than to the healthy flesh that surrounds it. The tumour isn’t served by my nervous system, so even though it is dying and visibly shrinking, there’s no pain in the tumour itself.

However, the damage to the surrounding flesh is considerable. My wife (a physician) commented that with throat cancer, unlike with radiation of internal tissues, you can see the damage that the treatment does to the inside of your throat. “It’s absolutely shocking what your mouth looks like.” At first, I told friends that it was like having a severe sunburn on the inside of my throat. That inflammation was (and is) easily visible. For a while, I found it unpleasant but tolerable. More recently, blisters and ulcers have formed on my tongue, gums, in the soft tissues surrounding my tongue’s base, and on the hard palate above it.

The increased damage has made it painful for me to speak or to swallow. The radiation is also killing my salivary glands. There’s less saliva, and the saliva I have is viscous, clogging my mouth and throat. This limits the number of hours I can sleep continuously. My throat clogs, I get a coughing fit, and the coughing wakes me up. (And it hurts.) I then need to clear my throat, possibly take a pain pill, and read until I can go back to sleep.

I agreed — reluctantly — to take Dilaudid, a potent opioid analgesic. I am not taking the maximum dosage, which is lucky because everyone tells me that the pain will continue increasing for the next month. This has helped immensely. However, Dilaudid immediately reshaped my life around a 4-hour pill-taking cycle. I take a dose, wait some minutes for it to begin to work, use a flattened club soda rinse to clear the icky saliva, then rinse my mouth with a lidocaine mouthwash. The opioid and lidocaine make it possible to swallow and talk, at least for a while. Each cycle, I try to drink 16 oz of water and an Ensure, and perhaps eat a poached egg. Then I read, do some chores, try to work, maybe play Skyrim, or nap until it is time for the next pill.

The radiation also kills my tastebuds. (Curiously, COVID-19 also deprives some people of the ability to taste.) Water now tastes like highly dilute dishwashing soap, and everything else tastes worse. My nostrils, however, are sharp as ever. So while my nose tells me that I have delicious food on my plate, my mouth tells me that it is inedible.

My fettucini, in better days (2020-04-11).

Moreover, if I can’t taste I can’t cook. It’s insane to be upset about this: I also won’t be able to cook if cancer should kill me. But cooking is my only craft skill (well, besides R coding and expository English prose). My wife and I are cooked-family-dinner-every-night people, family-feast people, bread-and-wine-and-beer-and-friends people. We are restaurant people and food tourists. Preparing and serving food to others is work I do to sustain love.

Bucatini alla’amatriciana, local craft beer, green beans, friends. 2020-05-10.

People tell me that my ability to taste will — probably — mostly return. I surely hope so. Should you get oral cancer, I recommend the autobiography of Chef Grant Achatz, the creator of Alinea in Chicago. At the peak of his career, he developed my cancer, but unfortunately, it was diagnosed at Stage 4. He was expected to lose his tongue and even then was given only an even chance of surviving two years. Instead, he chose a radical treatment plan: chemotherapy, followed by 64 sessions of radiation, followed by a surgery that preserved most of his tongue. Chef Achatz has recovered his ability to taste.

Me. 2020-09-07.

That’s all in a hypothetical future. Right now, it takes discipline just to eat. I have lost 20 lbs. Cancer — or its treatment — seems to induce anorexia. I’m clearly starving yet I have no appetite. Cancer has a look, a kind of grayness or weathering. I’m just starting to be able to see it. My wife says that I have had it for some time. My iPhone face recognition no longer recognizes me.

To read the Cancer Posts from the start, please begin here. The next cancer post is here.

@Bill_Gardner

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In a previous post, I walked you through my decision to have radiation therapy only, without chemotherapy. Now I’ve started therapy. This post is about what it’s like. I hope it will help you make an informed decision about radiation if, God forbid, you get throat cancer. Or it can give you insight into the experience of someone in your life who is going through this.

Radiation therapy means that a machine projects a beam of particles at your tumour. The particles damage the DNA in the cells of the tumour, making them less able to reproduce, and killing them. But to hit the tumour, they need to pass through healthy tissue, and they can also hit the healthy tissue on the margins of the tumour. Radiation damages healthy tissue, but not as much as tumour cells. The particles are photons, so if you think this sounds like getting a severe sunburn, that’s not far off. If all goes well, my tumour will be destroyed, and the throat tissue surrounding it will just be badly burned.

There are other side effects. Bones exposed to radiation are weakened. Radiating the throat damages your salivary glands, giving you a dry mouth. This is unpleasant, but what’s worse is that saliva is essential to tooth decay prevention. A dentist who specializes in radiotherapy patients delivered a come-to-Jesus talk. I have to give my teeth a special fluoride treatment every day, or I will need horrifying dental surgery. Yes, Lord! I haven’t missed a treatment yet.

A proton beam therapy machine. It looks like a $200M capital investment to me.

Proton beam therapy is also used in the US. There are data indicating that proton beams are just as effective as photons in terms of throat cancer survival, but protons produce less severe side effects. However, proton beam therapy is not available in Canada for my cancer. This is because

Proton therapy costs range from about $30,000 to $120,000 [US dollars]. In contrast,… IMRT (intensity-modulated radiation therapy [which is what I am getting]) costs about $15,000. A radiation treatment center with stereotactic capabilities costs about $7 million to build, versus roughly $200 million for a proton therapy center.

This price difference is one reason why Canada spends $4800 and the US $9900 per capita on health care (2016 spending). This difference allows Canada to spend substantially more on other social benefits, including universal parental leaves, child care, and subsidized university tuition. My view is that this is a better set of investments in public health and well-being, even though I am the loser in this case.

Before I started treatment, I got a computerized tomography (CT) scan of my throat to locate my tumour precisely. They began by injecting a radioactive dye that would be preferentially absorbed by the tumour. This made the tumour stand out in the CT image. The purpose of getting a precise image is to allow the radiation team to accurately target the beam at the tumour and minimize the exposure of healthy tissue to radiation.

The radiation mask of my head.

At the CT session, the radiation team made a mask of my face, head, and neck. They took a big sheet of some kind of plastic mesh and warmed it until it softened. Next, I had to lie on my back on a table with my head on a moulded plastic cushion that positioned my head to look at the ceiling. This is the position that they want my head to be in during the radiation. Then they placed the softened plastic sheet over my head and pressed it down so that it conformed to my head and neck. It’s a mesh, so I could breathe through it. In a couple of minutes, the plastic cooled and became rigid. They lifted it off — it wasn’t sticky — and there was my mask.

Why in the world would they do this? I wear the mask during each radiation session. It keeps my head in exactly the same position throughout each session. If I moved my head, the precise targeting of the radiation beam would be for nought. I’d have less radiation exposure to my tumour and more exposure to healthy tissue.

I will be getting 35 radiation sessions, on a Monday through Friday schedule. The idea is to limit the radiation dose at any given session while letting the tumour killing exposure accumulate slowly. Of course, this means that the side effects accumulate too. So far, I have had ten sessions.

Me on the radiation machine table. My mask is above my head.

Here’s what happens in a session. I lie down on the table of what looks like a CT or MRI scanner. There’s a bit of work to get me correctly positioned with respect to the laser lines you can see in the photo. Then they place the mask over my face and clamp it down to the table. This holds my head in position. Then the table, which is motorized, slides me so that my masked head enters the machine. There’s a lot of noise which must be connected somehow to the generation of the beam. After five minutes or so, the table slides me back out. There’s more noise, which I gather is the machine reconfiguring the beam in some way. Then the table slides me back into the machine for another few minutes of radiation. Then I’m slid out, they unclamp the mask, and I’m done.

What is it like to be in the machine? I can feel the warmth of the radiation. It’s not painful — at least, not yet — but there’s an increasingly urgent message from my flesh: “You do realize that this is burning me?” This is clearly going to get worse as treatment progresses.

The mask is now clamped to the table, locking my head into position. The table is about to slide me into the machine.

At first, the mask was a challenge. I can breathe through it, but my breathing is somewhat restricted. The lower edge of the mask presses a bit against my throat. There’s no real danger. But we humans are extraordinarily sensitive to anything that constricts our airways. During my first radiation session, I couldn’t help but think, “what would happen if I started to have trouble breathing?” “What would happen if this thing pressing on my throat got a little tighter?” Having those very thoughts made my heart beat faster, and that made me breathe a little more quickly. But trying to breathe more quickly just increased the feeling that I didn’t have free access to air. That raised my anxiety, which made my heart beat yet faster, and… you can see where this was going.

Deo gratias, I am not an anxious person. And I have participated in sports — long-distance open-water swimming and scuba diving — that teach you to remain calm under stress through careful control of your breathing. I’ve also logged 10 gazillion hours of Buddhist meditation, watching my breath and experiencing how simply breathing shapes your experience of your body and the world. So I knew exactly how to manage being masked: long, slow, steady breaths.

Breathing in, I calm my body and mind.

Breathing out, I smile.

Dwelling in the present moment, I know this is the only moment.

– Thich Nhat Hanh, Buddhist monk

As you can imagine, the mask makes radiation therapy exceptionally difficult for anyone with claustrophobia, anxiety disorders, or panic disorder. Some folks need to be anesthetized. Hypnosis and cognitive behaviour therapy have also been used to train people to tolerate it. If it hasn’t been tried already, may I suggest that a brief course on meditating on the breath might be a great help to radiotherapy patients.

To read my Cancer Posts from the start, please begin here. The next cancer post is here.

@Bill_Gardner

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