Our Cancer Journey Part 5: What we learned for ourselves, what you can learn from what we learned

What we learned

In the past now three years Marion and I have both learned to be more mindful, more deliberate, and move more slowly. 

After more than three years of living with a cancer diagnosis, it seems worth looking back and asking a bit what happened, and what we would do differently.

For Craig, looking back on the time leading up to my diagnosis, I have come to the following “after action report” summary of how I got to the point of Stage IVa cancer before being diagnosed:

  • I was always very careful about my health, but I did not distribute the care properly across different types of potential maladies. I focused on the risk factors relevant to my family history without paying attention to the fact that other diseases – such as colon cancer – are on the rise. I also didn’t factor in the fact that I have what is probably a more stressful work life than many of my ancestors.
  • Blaming myself. I had noticed that my running workouts and my satisfaction with them had deteriorated in quality. In retrospect this decline was probably noticeable for two years before I was diagnosed. Rather than thinking that somehow this was my body’s fault, I blamed myself. I blamed myself for somehow not working out enough, not working out carefully enough, weighing too much, not concentrating well enough, not being tough enough, something, anything. This view was so engrained in my that the semester before I was diagnosed my response to how I felt about my running was to get up at 5 or 5:30 in the morning to run sprints on one of the indoor tracks at IU.  I did everything but consider the possibility that there was something wrong with my body that was causing it to underperform, and that this was at the root of the problem.
  • Health professionals didn’t do everything they might have. Between 2011, when I was checked over head to toe and declared fully healthy, and 2017 when I was diagnosed with Stage IV cancer, I was seen by more than half a dozen different primary care physicians. Not one of them recommended one of the noninvasive tests that might well have detected my colorectal cancer months or years earlier than it was actually found. At the same time, I let myself fall into a relationship with my primary care physician (PCP) that didn’t work for me. Not that my PCP is a bad doctor; far from it. But the way my PCP’s practice and staff communicated with me just didn’t work for me. I needed a PCP who would have someone call me and say, “get yourself into the office by the end of next month for the following tests, period” and I didn’t have that.
  • I was embarrassed about talking about bodily functions. By sometime in 2016, I knew that I was going to the bathroom a lot, but I was sure it was somehow my fault. I was too embarrassed about it to ask my wife or a doctor, “Hey, does this seem right to you?” I was convinced I was not eating carefully enough, or not exercising enough, or something. The instincts that have always helped me in my life and my career kicked in: put my shoulder to the wheel, work harder, try to somehow figure out how working harder would make the problem go away. 
  • I have a very high pain tolerance – always an asset in running and work, as counter-productive in this situation. (As a runner I was always very competitive at distances of 50 miles or so – much more competitive than at marathon of 50K distances. That’s because someplace between 31 miles and 50 miles pain tolerance becomes an important factor in running performance). My pain tolerance led me to shrug off things that I should not have shrugged off.
  • I am colorblind. In fact, I am almost comically colorblind. Men who are red/green colorblind tend to self-diagnose colorectal cancer later than those who see color properly (see Reiss et al., 2001, https://doi.org/10.1001/archinte.161.3.461). Things that look red to normal people look brown to some colorblind people, so blood in the toilet goes unnoticed.

Since being diagnosed, I have read widely and deeply – more than ever before in a lifetime of reading. Being pinned to a couch with the after-effects of surgery helps on these points. I have not changed my basic life goals. I have refined my values and changed the time order on which I attend to goals, promises, and commitments. Being told that I was probably going to die was an interesting gut check. I was not afraid of my own physical death. I was afraid of dying without keeping promises to my wife Marion. I was afraid of not finding out if great grandchildren are even more fun than grandchildren.

Perhaps the two most important lessons I have learned are these. First: to receive gracefully. I had little other choice but to receive, because at times I was unable to take care of myself. Luckily something in me helped me receive with gratitude. Second: I learned to trust that I am an o.k. person; something I have never really done before. This was learned not through any accomplishment of my own, but out of the simple belief that all of the people expressing care for me couldn’t be wrong. The voice in my head that says, “Never good enough” or “If only people really knew, they wouldn’t like you” has not gone away. But I quiet that voice with memories of the kindnesses received since my diagnosis. 

Marion’s takeaways from all this are as follows:

  • Would I do anything different today? Sure I would:
    • I would not have acquiesced during our conversations about Craig’s health. Craig is an excellent rationalizer. Sometimes too good, and this was one of those times.
    • I would have taken better care of myself than I did during the acute phases of Craig’s illness
    • I would answer all the calls and e-mails to let the senders know how much they matter. On many days they were all that got me dressed.
    • I would take time to paint and garden. 
  • I think what saved my sanity were just a few simple things (in order): my love for Craig; anti-anxiety medication; our kids, who were omnipresent, on the phone and in person at the infusion center; a brother I knew I could call at 2am, any day (I did that a lot, always in tears and desperate for answers, of which there were none); exercise, mostly with my running buddies (without them, there would have been times when my head would simply have exploded); my Kindle and mindless reading of simple novels that took me to places I now cannot even remember. 
  • Moreover, I believe I have identified important issues I must continue to work on: I am a realist more than an optimist. A little bit of optimism really goes a long way.
  • It is o.k. to de-select people who are not helpful, or worse, are a drain on the system.
  • I must remember how fortunate we really are in this unfortunate situation. We have a lovely family, great friends, great medical care, good insurance, the time and opportunity to heal without having to worry about keeping a roof over our heads. I have a friend who has had cancer twice. She says cancer families live their lives 90 days at a time for the first 2 years, then we get 180 days for the next 3 years. She is correct. The language has already crept into our daily conversation, without much fanfare. IF the next check-up is o.k., we will register for a half marathon. If the CEA stays below 2.5, if the THIS. . . then the THAT. If not, go back to the beginning, or some version thereof. 
  • The health care system in the US is organized in a way that I find fundamentally unjust. 

Portable lessons for all

First some important specific piece of information relative to colon cancer. Colon cancer is on the rise, and no one really knows why. It’s NOT the result of more testing, because the rise in colon cancer cases is coming with a decrease in the age at which people are diagnosed and in increase in the severity of the cancer at the time of diagnosis. That’s right: people are being diagnosed younger and at a more advanced state of the disease.

Colon cancer detection guidance has changed since the time I was diagnosed. A study published just this year suggests that for people of average risk for colon cancer, and annual FIT test is an excellent approach to colon cancer detection (https://medicine.iu.edu/news/2019/02/new-study-shows-annual-non-invasive-stool-test-effective-for-colon-cancer-screening). FIT stands for fecal immunochemical test and it is a noninvasive, “poop in a box” text that one can perform once a year. They are now available for sale, on the shelf, in many pharmacies and in grocery stores that have some sort of walk-in clinic. There was one day where I was a bit worried about going to the bathroom three times while doing some remodeling, and as I was worrying thought I would go to a walk-in clinic once I was done with my day’s work. Once I was done, I was no longer worried, plus it would have been a big hassle I thought. If you are worried about colon cancer – or other gastrointestinal system worries – you can now buy a test kit off the shelf, or just walk into a walk-in clinic in a nearby pharmacy or grocery store and for a bit of money, a bit of inconvenience, and with a mildly undignified process find out on the spot if there is blood in your stool. 

More generally here are things any person can do to be healthier in general, as follows:

  • First and most importantly, consider taking a fairly formal and diligent approach to planning for your health and happiness. The bestselling book “Your Best Year Ever” is unusual among self-improvement books in that it incorporates planning for health, happiness, and career as an integrated whole (Michael Hyatt, 2016, Your Best Year Ever: A 5-Step Plan for Achieving Your Most Important Goals). Imagine Franklin Covey, not quit as “grandfatherly” but covering your entire life, not just your work life. As part of this, take one day a year and give your body and health an annual performance review. Take a whole day off, and do nothing but concentrate on evaluating and planning for your own health. If you are dissatisfied with your health and it is not meeting your own performance criteria, get to your current doctor and get help. If your doctor is unwilling to help, get a new doctor who is. 
  • Manage and track your own health records and take responsibility for getting all of the tests recommended for you given your age and other characteristics. No one else is going to track these things for you. Tour primary care physician may not even tell you what tests you ought to take according to the federal government.  The tests recommended by the US Preventive Services Task Force change constantly, as new medical research and new analyses help medical researchers try to balance costs and benefits of testing. There is an online web form at https://healthfinder.gov/myhealthfinder/. Find out what tests you should be having given your age, gender, and other factors, and have them – even if you have to argue with your primary care physician or switch primary care physicians. You after all pay them. They work for you. 
  • Perform self-exams regularly. Everyone should do monthly self-checks for skin cancer, breast cancer, and/or testicular cancer. Information on these exams is available at:
  • Avoid sitting for prolonged periods of time. It’s bad for your health. Tips on periodic exercise to mitigate the impact of sitting for prolonged periods are available in the book: J.K. Healey. 2016. Stand Up For Your Health!: Understand the Deadly Dangers of Sitting All Day and Add Years Back into Your Life Using Simple, Fun Exercises at the Office and Home.
  • Exercise and maintain (or attain) a healthy body weight. These are, of course, the eternal and iterative goals for many of us. The book “Your Best Year Ever,” mentioned above, is particularly helpful in that it offers guidance to turn this wish into actionable plan with concrete ways to positively reinforce your progress as you go. If your BMI is outside of the range identified as normal, think about changing that. Correlation, of course, does not imply causation; however, rates of incidence of cancer and rates of obesity in the US are both rising. (And no matter what, obesity is itself a health risk.) There are many suggestions in the literature that leanness confers reduced risk of cancer.
  • Consider giving up the Standard American Diet. It is often referred to as SAD for a reason. There is a growing body of literature that suggests that a meat-averse, high-carb diet is unhealthy and out of sync with the evolutionary history of our species. Good references on low-carb diets include books such as that by Sisson and Kearns (Mark Sisson and Brad Kearns. 2017. The Keto Reset Diet: Reboot Your Metabolism in 21 Days and Burn Fat Forever).  Some experts criticize extremely low-carb diets, but you can greatly reduce your sugar consumption, increase your health, and at the same time avoid the pitfalls identified with extreme low-carb diets. In any event, read labels. Manufacturers of food and food-like substances are required to put nutritional labels on packages of food. Those are typically shown “per serving”. Almost anything looks reasonably healthy if you make the portion sizes unreasonably low. As you purchase any sort of food, and particularly any sort of snack food, do the math and calculate the nutritional, caloric, and chemical contents of what you might eat. Don’t make dietary decisions on the basis of nutritional values for some artificially small portion size that represents much less than the amount you will actually consume. (While partly a joke, the statement that a “portion” of Girl Scout Cookies” is one tube of them has an element of truth to it. And even when portion sizes are rational, what’s actually in a particular item of food can be quite a surprise.
  • Consider adding some sort of mindfulness practice to your day. Even a few minutes a day of getting away from the stream of thoughts that pummel us every day could be good for managing your stress levels. The many approaches to mindfulness practices include several forms of meditation, Tai Chi, Qi Gong, prayer, etc. A good entry point to approaches to mindfulness is Mindful Magazine (mindful.org).
  • Consider specific things you could do to reduce your chances of getting cancer. Reference books that provide useful information on how to lower your risk of cancer include Patrick Quillin’s 2005 book Beating Cancer with Nutrition. 

We hope these posts have been helpful. This is almost the end of the story. We hope that these posts have been helpful to you. We hope these commentaries have helped reduce stigma. And we hope that they have provided a bit of information that helps you, if you or a friend are dealing with cancer, think about how to deal with your own journey. We hope particularly that this post has practical information that will help you manage your health.

For what it’s worth, portions of this and earlier posts are taken from a paper that my wife and I presented at a computing conference last year (2018):  Stewart, C.A. and Marion Krefeldt. 2018. Your Good Health is a Workforce Issue. PEARC ’18: Practice and Experience in Advanced Research Computing, July 22-26, 2018, Pittsburgh, PA, USA. ACM, New York, NY, USA, Article No.: 75. doi:10.1145/3219104.3219107  

There is one more post coming after this. Not a scientific one but rather a post that will address a question I have been asked repeatedly about how I integrate my world view as a scientist and my spiritual life as a person of faith.