Cancer: A Twenty-Year Reflection

bug-fights-cancer

Twenty years ago, I was diagnosed with cancer. I’m not one for marking anniversaries just to count the years, and I generally don’t celebrate myself as a cancer survivor. However, I have always been open about having cancer, and given a number of things going on in my life, I wanted to reflect on this anniversary. This essay is the story of my cancer diagnosis and recovery, followed by reflections on work that underscore the importance of self-regulation and of treating ourselves and others with compassion and understanding.

Cancer

My wife and I had just moved from Canada to California to start my first job at a small, privately owned industrial-computing company.[1] I didn’t really know what I was getting myself into, but I had an intentional plan to learn how to develop software, professionally, in a domain related to my undergraduate studies in mathematics, systems engineering, and control theory. I wanted to build software that was applied to solving engineering problems.[2]

A couple of weeks before I moved to California, I was in some discomfort travelling in Scotland for the annual World Pipe Band Championships. I recall a dull pain, usually most noticeable waking up in the morning. I didn’t think too much of it, figuring it was from the exertion of playing bagpipes for so many hours that summer, or from sitting and working on my thesis for hours at a time, and that it would go away once I finally got to California and settled in.

“At the line” with the 78th Fraser Highlanders Pipe Band as rain starts to fall on Glasgow Green at the 2001 World Pipe Band Championships. We made the prize list, coming sixth.

Eleven days after moving to California, and just six days into my new job, I was woken up by a phone call. I turned on the television. The second plane had just hit the World Trade Center in New York. What was already a big move, almost three thousand miles away from friends and family, now felt even bigger. I walked to work but the streets were eerily empty, as was the office when I arrived. I wasn’t even sure what to do as I hadn’t met my manager yet—she was on-site working with a customer in Wisconsin and, like many others, got stranded after September 11th.

A few weeks later, I travelled home for my sister’s wedding. One of the things that made moving to California a bit easier was knowing that I would be home again soon to reconnect with friends and family at the wedding. Flying in those first few weeks after September 11th was surreal. I continued to have discomfort while at the wedding and at a training course in Montreal the following week learning how to program a SCADA system that I would be working on.[4]

Once I returned to California after the wedding, I was in even more discomfort. I decided it was time to see a doctor. I was paired with a young doctor just starting his career and accepting new patients. Before going to medical school, he graduated from Stanford with a degree in engineering, which appealed to me. I met him for the first time at an early-morning appointment on Monday, November 19. We introduced ourselves, he asked for a bit of medical history, then he asked what brought me in. I told him about my discomfort. I figured he might tell me I had a hernia. As he examined me, there was a subtle pause of his hand and a look on his face that I will never forget. I knew right then that something was wrong.

My doctor sent me for an ultrasound and blood tests, all conveniently in the same facility. I remember waiting for his clinic to open again after the lunch hour to hear the results. Then, my new doctor, a person I had only met a few hours earlier, told me I had cancer. I don’t recall being shocked, or angry, or numb, or overly upset. Somehow I just adapted to this new reality.[5]

My doctor scheduled an appointment to meet with my surgeon that afternoon. My surgeon was a doctor with a wonderful demeanour. I trusted him immediately. My surgery would have been scheduled for three days later, but that was American Thanksgiving, so it was scheduled for the following Monday, instead.

I went to work the rest of that week. By the end of the week I was in significant pain—standing, walking, sitting, I just couldn’t get comfortable. I remember commuting on the train to work, lost in thought. I was scared, for sure, but more uncertain than scared. I could feel the expansiveness and the impermanence of life all at the same time. I remember wondering: “Where will I be this time next year, or the year after? What will life hold?”

I had my surgery seven days after being diagnosed. I remember waiting in preoperative and a nurse asking me to mark where my incision should be with a Sharpie. I laughed and said, “I’m not a surgeon, I have no idea.”[6] I remember the anesthetics being administered and losing conciousness, rapidly and thoroughly. In the recovery room, they wanted me to eat a few crackers and drink some water before being discharged. As soon as I got home, I promptly vomited whatever I managed to get down, a combination of nausea from the anesthetics and motion sickness from the cab ride home, wondering if I was going to tear out my stitches in the process.

I recovered at home for the next two weeks. Work delivered a laptop to me so that I could read some documentation. This was years before remote telecommunications, like instant messaging or video conferencing, were available. There wasn’t even VPN access to the corporate network, so there wasn’t much else I could do. I was prescribed painkillers, but they didn’t do anything except constipate me and make me even more uncomfortable. My primary source of pain relief was ice on my incision all day long. I remember sleeping on the couch, it raining a lot, and not doing much of anything. After a couple of weeks I felt pretty good. I returned to work and reasonably normal activity.

Recovering at home after survery. The balloon was from work when they delivered my laptop. No one who knows me would ever buy me that balloon.

I had my postoperative appointment late in the afternoon on December 24. I remember my surgeon examining his work and being very pleased with it.[7] He also reported that my blood serum levels for alpha fetoprotein (AFP), human chorionic gonadotropin (HCG), and lactate dehydrogenase (LDH) had all returned to normal, a very good sign that the cancer was excised and there was no metastasis. A computed tomography (CT) scan of the chest, abdomen, and pelvis, with iodine contrast, also showed no spread to the lymph nodes, lungs, liver, or other organs. Delighted, he sent me on my way and told me and my wife to pop a bottle of champagne to celebrate. When I left the hospital, it was dark. I remember walking home along an unusual section of sidewalk that sparkled, reflecting the street lights above, feeling very good about life.

My mom and in-laws arrived two days later to visit for the holidays. It poured rain for a week, but we still had a great time. In January, I met with my oncologist for the first time. Echoing my surgeon, he was pleased with my blood serum and CT scan results. He said I had three options for treatment: 1) regular monitoring with blood tests for tumour markers and CT scans for lymph node spread, 2) an invasive surgery to dissect my retroperitoneal lymph nodes to assess metastatic disease and inform further treatment, or 3) spend the next few months doing intensive chemotherapy. He noted that one of the cancers—I had three types in my tumour—would not show up in the blood tests if it had spread. He also made it clear that if I chose chemotherapy, I would not be going to work for many months.

Back to reality.

Even though I felt back to normal, this was a stark reminder of the seriousness of my disease. My oncologist was happy to describe my options and give me statistics on outcomes, but he would not tell me what to choose or provide his opinions on the best choice. The first option, monitoring with blood tests and CT scans, was relatively new at the time. Without the benefit of years of study, the efficacy was uncertain, but this was the option I chose. My primary care physician, the same doctor who originally detected my cancer, was my most valuable advisor. He said that if I chose the monitoring approach and my cancer progressed, I could still do chemotherapy. If I did chemotherapy immediately and it wasn’t effective, I was essentially out of options, to say nothing of the side-effects of chemotherapy. The second option, additional surgery, with the associated risks, didn’t appeal to me at all.

I continued with regular blood tests and CT scans for a few years—monthly for the first three months, then every three months after that. I can remember the anxiety slowly building as each round of testing approached—the feeling that the cancer may have spread and was growing inside me, then relief when my test results would come back normal.[8] At one point, the radiologist was not happy with a shadow in my chest from one of the CT scans. I had a follow-up positron emission tomography (PET) scan to investigate further, but it came back normal.[9] After a few years of close monitoring, I was eventually turned loose. There was no specific milestone where I was discharged, it was more of an organic process of my doctors no longer seeing the value in following up, or some of them simply retiring.[10]

Work

What does any of this have to do with work? Two things stand out. The first is self-regulation—balancing stress and work with health—and the second is how exceptionally I was treated at work.

The year before I was diagnosed was very stressful. I set a deadline that I would spend no more than two years working on my Masters thesis.[11] Anticipating my graduation in May, I started interviewing for full-time employment in the winter. I interviewed in California in February and I accepted my offer in March. With my work visa issued for the beginning of September, a hard deadline was set for me to finish my thesis.

I found writing my thesis unproductive in the daytime—I would spend hours in front of my computer in the lab without much progress. At night, I would get into a state of flow and I would often write until exhaustion in the wee hours of the morning. At the same time, I was playing in a pipe band in Toronto and trying to win a World Championship. I was driving to Toronto two times a week for practices, a three-hour trip each way, and often driving to a competition on the weekends. I would get home from practice at 2:00 or 3:00 in the morning, adding to my disordered sleep. I also wasn’t eating great, mostly on the run.

In the lab in graduate school.

I will never know if my neglect of diet, disordered sleep, lack of exercise, or high levels of stress caused my cancer, but they certainly didn’t help prevent it. We all have the beginnings of cancer in our body all of the time, but our body is good at detecting and eliminating unhealthy cells through autophagic processes. Attention to diet, sleep, exercise, and stress are important to let the body self-regulate. When we don’t do this, the body will send louder and louder signals to get our attention. Gabor Maté’s book When the Body Says No is a fascinating thesis about the connection between stress, emotions, and disease. Stress and emotions are not disembodied things, they are ultimately biochemical, and it makes sense that they can manifest in the body in any number of ways.

In the years since, I have prioritized my health more and more. I rarely compromise on sleep.[12] I eat well. I experiment with fasting. I exercise more regularly now than I ever have.[13] I’m trying to meditate more regularly. I have supplemented vitamin D pretty religiously for many years now.[14] My serum vitamin D levels were low when I had them tested a few years after my cancer. When I was finishing my thesis I was rarely outdoors. There is significant evidence that vitamin D is protective against cancer, as well as other disease, and there is virtually no downside to its supplementation. Perhaps most important in self-regulation is knowing when work or life is a bit too much, learning how to be in touch with how I’m feeling, knowing what my triggers are, and getting better at asking for what I need. We need to take care of ourselves first, because no one else really can.

Even with self-awareness, this is a hard balance to strike. A decade ago, I was in a bad place at work, frustrated by a company that lacked leadership and undermined important employees.[15] I felt isolated and misunderstood. It definitely impacted my health. Even today, what are the impacts of operating critical infrastructure twenty-four hours a day, seven days a week? Even when I’m not on-call, work is in the back of my mind. Or the stress imposed by the interrupt-driven style of modern work? I want to unplug and focus—to self-regulate—but it is hard.

The second thing that stands out to me in terms of work is how well I was treated once I was sick. On the Friday before my surgery, my manager, Julie, sent me home with instructions to just get better. Julie was amazingly kind, open, and understanding. Just writing these words makes me very emotional. I wasn’t asked to take vacation or sick time—not that I had accumulated much after only working for a couple of months—and there was no discussion of a long-term leave. Julie wanted a phone call as soon as I was out of surgery, she offered groceries and support, and treated me like family, when all of my friends and family were thousands of miles away.[16]

At work, a few weeks before being diagnosed. A DEC Unix computer on the right and SCADA manuals on the left.

If I ended up doing chemotherapy and being away from work for an extended period, I would have had to arrange something, but there was no point adding to the stress until we knew more. In the end, I was only away from work for two weeks, and I was able to work some of that time at home. I more than repaid that time to the company through my work over the next thirteen years, but I really appreciate how I was treated, especially as a brand new employee, not someone with years of contribution.

I understand that not all companies or all roles can be as flexible. I developed software, I didn’t work in operations, or have a physically demanding job. The human resources department at the time was just one person, Louise, a motherly figure to all of us. The company felt like a family. But we need to remember that everyone has a lot going on in their lives. We always need to treat people with compassion and understanding and expand our time horizon beyond the immediate. My experience reminds me to be a human manager and a human colleague. When faced with a difficult situation, or even just an everyday situation, see if you can do things a little differently, too. See if you can do things with compassion and understanding. Even at a big company with a human resources department that goes by the book, there is probably more flexibility than you might think.

Anniversary

To mark the twentieth anniversary, I took the day off work—a day for reflection and self-care. Because of the pandemic, I hadn’t seen my doctor in over two years. I enjoyed booking an appointment on the anniversary to say thanks, reminisce, and get a check-up. He examined me and checked my blood work, just as he did on the same day twenty years ago. It was routine, just as it has been the past many years, without my discomfort or his telling pause, but the routine remains a reminder. After, I had lunch, I had a beer at a favourite spot where I’ve written many articles on this blog, and, most importantly, throughout the day I spent time, in person or on the phone, with the most important people in my life.

I got very lucky that I had discomfort (not everyone does), a skilled doctor who detected my cancer early, and a treatment plan that, in the end, was not overly burdensome.[17] Cancer is endemic. Everybody knows somebody who has had cancer. I’ve had a number of family members, friends, and colleagues who have had cancer. Some have had difficult surgeries, chemotherapy, radiation, and drug treatments. Some have died from it. As I write this, one of the most important people in my life is now living with cancer and the uncertainty that it brings. I would love to see a world where cancer is a disease we prevent, or at least treat much more effectively than we do now.[18] Until that day, a focus on self-regulation and on treating ourselves and others with compassion and understanding are important means of cancer prevention and treatment, especially when balancing cancer with our work.

Epilogue

I asked myself why I wanted to share these reflections, since they are rather personal. I think it is an interesting story and there are valuable lessons for self-regulation and relationships within the context of work, but there was more to it than that. Nostalgic reflection is also a form of self-regulation that connects the past with the future—it connects us with people and helps us figure out what is most important in life.[19] Given my stage in life and the things going on in my life, I believe this is what motivated me the most to reflect and share. I hope a few others find it helpful.[20]


  1. I moved to California with my wife and she is a very important part of this story. These experiences are her experiences, too. She was with me for most of my hospital visits and she provided great comfort. This essay got confusing switching between I and we, so I’ve decided to just write it in the first person. ↩︎

  2. I fell in love with programming in graduate school building a simulation of an aircraft environmental control system.[3] I originally developed the simulation in Simulink, then in Matlab, but both were too slow, taking days to simulate a few minutes. I eventually took a course in C++ and programmed the simulation a third time. I have never liked programming for programming’s sake. What I enjoy about programming is that I can think in systems and I can implement, study, and iterate on complex systems all on my own. For comparison, building an oil refinery in your apartment to study systems engineering is tricky, to say the least. ↩︎

  3. I also spent hours shoehorning Linux onto my Frankensteined lab computer. These were the days when installation was not easy and finding the right drivers was tough. ↩︎

  4. Programming on this SCADA system was a great lesson in near real-time, event-based distributed systems. Everything was event-based through callbacks on a single-threaded event loop; it had mechanisms for subscribing to and acting on events as they happened; and it had a wonderful event-based distributed locking mechanism for determining ownership across nodes in the cluster that worked very well. It was all written in C and ran on DEC Unix. ↩︎

  5. Lance Armstrong described a similar experience being at the hospital all day for diagnosis on Peter Attia’s podcast. I was absorbed listening to this a few weeks ago. It made me emotional and made me realize how lucky I was. The Drive focuses on health and longevity and is by far my favourite podcast. Other interesting episodes on cancer include Sarah Hallberg on her personal journey through experimental treatments focused on variety and dosing and Robert Gatenby on cancer treatment through the lens of evolutionary models. ↩︎

  6. In hindsight, the nurse wasn’t actually asking me to mark where the incision should be. She was asking me to mark the side of my body the cancer was on to minimize the chance of surgical error. ↩︎

  7. The incision still looked pretty ugly to me, but, years later, I can barely see it. ↩︎

  8. After a cancer diagnosis, it is hard not to over worry about even minor aches and pains. ↩︎

  9. The clinical use of PET scans for cancer was still relatively rare and costly. The hospital did not have a PET scanner, but did have access to a mobile PET scan unit that visited the hospital periodically. After being injected with the radioactive sugar, I fell asleep in the scanner listening to the relaxing music. ↩︎

  10. When my surgeon retired about a decade after my diagnosis a new one was assigned. When I met him, I was surprised that he still held open the possibility of persisting disease. ↩︎

  11. I had seen a number of graduate students whose research and writing dragged on longer than this and I felt that was too much time to invest in a Masters program. ↩︎

  12. Matthew Walker’s book Why We Sleep is an excellent book on the importance of sleep. It also has a lot of advice on improving sleep. See Peter Attia’s three-part interview with Matthew for an introduction: Matthew Walker. Since reading this book, I have tracked my sleep with an Oura Ring. ↩︎

  13. Working from home during the pandemic has helped me exercise a lot more. ↩︎

  14. Fish oil is the other supplement I take religiously for its many positive benefits, including mental health. ↩︎

  15. Unfortunately, the same company that felt like a family a decade earlier lost its way technically and culturally. ↩︎

  16. My mom was so moved she wrote Julie a letter and my mom was keen to meet Julie and say thanks the first time she visited me after my surgery. Julie was also instrumental in helping me finish my Masters thesis. I was unable to complete it before moving to California and intended to wrap it up in the few months after moving. After I got sick, I took a medical leave from the University for a couple of years. Once I began working on my thesis again, I had to update my literature review and I also found an error in my simulation results and had to redo them. I finally finished my thesis and graduated in 2005. I would not have finished without Julie’s encouragement and support. ↩︎

  17. CT and PET scans involve a significant amount of radiation. I can’t even recall how many CT scans I had. It is uncertain what the long-term consequences are. ↩︎

  18. If I wasn’t working as an engineer, I might be tempted to have a career in cancer or longevity research. Maybe some day. ↩︎

  19. The first thing that someone asks when you tell them you have or have had cancer is “What kind?” I didn’t say what kind of cancer I had in this essay, although it is not hard to figure it out, because I wanted the story to be about the cancer experience, not a particular kind of cancer. ↩︎

  20. The toy bug in the picture at the top of this essay was on my desk when I returned to work. I’m not sure who put it there but I like to think they thought it looked like it was fighting cancer and would help me out. I’m not superstitious but I still have it on my desk to this day as a fun reminder. ↩︎