Month: April 2020

That I am here today writing this is the end result of decades of research about cancer treatment and now years of work treating me and keeping me alive. 

First and foremost I must thank my wife Marion Krefeldt. Without her, I’d be dead long ago. She is the love of my life, and always will be. When I was diagnosed she made keeping me alive her job and she has done that. 

And now thanks from both of us: Our families have been particularly strong supporters: our children, their partners, and our grandchildren Kai (and husband George), Katja, Madeline, Michael; Tony (and partner Kristen) and younger grandson Elan. Until COVID-19 put an end to visitors at the IU Health Hospital this spring, Tony visited me for every infusion session I have had over more than 3 years, save 3 when he was himself ill. Marion’s brother Uwe and his wife Ines, and our nephews Nils and Tim, have been wonderful help. My family, particularly my Mom, my sister Jodie, and my niece Jennifer, have been great help. Special thanks to Iñigo Diez Garcia, our Spanish son and a member of our family in all ways that count. And thanks to Sanjoli and Abbey, our most recent household cohabitants and the newest members of our global family.

Friends and coworkers have been tremendously supportive and helpful. Matt Link and Von Welch have been particular sources of support and strength. The Finance Office in the Office of the Vice President for Information Technology sent me a huge care package when I was first diagnosed. The accountants? Thanks particularly to Heather Pawluck for being the force behind this and to Matt Allen for his musical curation. Therese Miller and David Hancock are in a special category as dear friends and the people behind the cement “Rocky the nonflying squirrel” and the “Bad to the Bone” sign that now grace my office. Everyone I know at Indiana University has been just wonderful, particularly my fellow leaders in the Office of the VP for IT, everyone in the Pervasive Technology Institute, particularly the Research Technologies Division of UITS, has been wonderful. Dave Hancock, Matt Link, and Von Welch belong in a special category among friends and colleagues. Matt ran the Research Technologies Division of UITS while I was sick and went on to take on leadership of that group permanently. Dave Hancock took on leadership of the Jetstream project when I was first diagnosed and took it over permanently as well. Von Welch graciously led PTI while I was sick, and then was happy to focus on the Center for Applied Cybersecurity Research as I came back and was able to resume my duties leading PTI. 

Cancer isn’t fun, but it isn’t all bad. I’ve gotten wonderful hugs from many friends and coworkers – prominent among them are Stephanie Cox, Kate Holden (virtually), Tassie Gnaidy, Marianne Chitwood, Deb Allmayer, Rob Ping (hugs from hot guys are nearly as great as hugs from hot chicks). Rudeana Honeycutt and Monica Shannon have been my everyday support for now many years. And IU VP for Information Technology and CIO Brad Wheeler has been extraordinarily kind and considerate. IU President and First Lady Michael McRobbie and Laurie Burns McRobbie have been extraordinarily kind and thoughtful as well.

I have learned a lot in this whole escapade. Particularly wonderful sources of wisdom and support have been David Y. Hancock, Richard Meraz, Barry McDonald, and the now deceased Bob Epps and Mike Winter. Steve Simms, Eric Sinclair, Anne Zender, Matthias Mueller, Chris Bischof, the Wernert family, and Robert Henschel deserve special thanks as well. Max Lauchli, Patrick Casey, Michael Fitzgerald, and P.T. Wilson have been sources of support and insight. Jimmy Moore, Mary Beth Morgan, and the entire communities of St. Marks United Methodist Church and First United Methodist Church of Ellettsville have been great support. From Ellettsville Cindy Spahr and Mava Rogers deserve special callouts. The Chronic Disease Support Group organized under the auspices of St. Mark’s United Methodist Church has been a tremendous source of support. 

Brian Holzhausen and the entire DINO trail running community (http://www.dinoseries.com) deserve special thanks. One of the things that kept me going in the darkest moments was a desire to get back and toe up for a DINO trail race. Thanks also go to the Bloomington Area Runners Association. And if you are thinking about trying out a race, remember…. Everyone that toes up and runs beats anyone who does not. Running a race is a great form of being in community no matter how fast you are. 

Under the category of “not everything is bad no matter what,” cancer has brought me the close friendship of Don Byrd. His wife Susan and my wife Marion worry, justifiably, about what Don and I are capable of cooking up if left to our own devices. We’ll try to keep at it, knowing that our better halves will not leave us to our own devices very long or very often. This has also been a time when I have deepened my friendship with Chrissy Garrison, whose friendship and whose books (https://sillyhatbooks.com) have been sources of support, entertainment, and distraction when distraction was what I needed the most.

The people who support Marion deserve special thanks as well. I know many days they have been and continue to be the support that gets Marion through the day. Particular thanks to Susan Schneider, Marie Deer, Sue Swany, Beth Lodge Regal, Rhonda Winter, Marion’s walking group, running group, English Book Club, and German book club.  Susie Hinkle and Jennifer Hart have long been sources of support for both of us.

Keeping me alive in spirit is great, but somebody needs to take care of the body as well. I don’t even know all of the names of all of the people who have kept me alive. Some of them I never got to meet while awake, as members of surgical teams often came and went without me ever being awake to thank them. Gratitude is owed to many that I can name or at least identify, including:

• The nurses and technicians of IU Health. Thank you all. Particular thanks go to the staff of the IU Health Indianapolis Infusion Center and the nurses and techs on the 3^rd and 4^th floors of IU Health Hospital Indianapolis. The most miserable nights of my life were spent on those floors, and the nurses and techs were a source of comfort and aid.
• Dr. Patrick Loehrer and Dr. Ora Pescovitz. Dr. Loehrer is the Director of the Simon Cancer Center and my primary oncologist. He is also the IU PI of the research study that is keeping me alive. He is an internationally recognized GI cancer researcher and a wonderful person. Dr. Ora Pescovitz is the former Executive Associate Dean for Research at the IU School of Medicine. She is responsible for much of the greatness of that School today. And when I was at my desperate, I reached out for her help when she was nearly half a globe away on Valentine’s Day 2017. At something around midnight local time she called Dr. Loehrer who turned around and called me at about 8 pm on Valentine’s day to say that he and the IU Cancer Center would do their utmost to take care of me. And they have.
• My surgeons, gastroenterologists, and radiation oncologists: Bryan K. Holcomb, Michael G. House, Ehab El Jagg, and Susannah Ellsworth. Though the slightest of the bunch in physical stature, I am most scared of Dr. Ellsworth (radiation oncology) who certainly hurt me the most.
• A special shout out to the MDs of the IU Precision Health Genomics Program: Milan Radovich, Bryan P. Schneider, and Bert H. O’Neil.
• Dr. Tracy Gunter and Linda Brown deserve special thanks. Dr. Gunter in particular has been a part of my medical team from my first day of chemotherapy up to today. On days when the car is in the middle of the road, I have her to thank. Both have been invaluable to our success in navigating these waters.
• Dr. Marc Frost gets the unique trifecta of being one of my doctors, a friend, and a running buddy.
• Other members of my medical and advisory team that deserve special thanks are Drs. Anantha Shekhar and Paul Herscu and Linda Manus.

Three organizations deserve special thanks; I donate to all regularly and if you find yourself dealing with cancer, you may someday have reason to as well: 

• The Simon Cancer Center. THE number one reason I am alive is the medical treatment I received from the experts at the Simon Cancer Center, part of IU Health. Donate at http://cancer.iu.edu/giving/index.shtml. As a sign in the cancer pavilion states, we who experience cancer thank Melvin and Bren Simon for the gift that established this center.
• Fairhaven. To quote their web site – “Thousands of patients come to Indianapolis each year from across the Midwest for expertise and specialized care … We share the love of Christ during a time of great difficulty by providing a convenient and comfortable place to stay near the hospital.” Marion and I stayed in one of their apartments in Indianapolis and are ever grateful. Donate at https://fairhavenfoundation.com/donate-to-fairhaven/
• Caring Bridge. Caring Bridge provided Marion and me a way to communicate and hear from a wide group of friends and supporters. https://www.caringbridge.org/give

And in closing: I am ever so grateful to you for your support, and for reading these posts. I hope they have been of use to you. Nothing on earth is ever so good that there isn’t something bad contained within, and nothing on earth is so bad that it is impossible to wrest some good from it. Understanding the love and support that surrounds me, and helping others, have been among the good that has come from my experience with Cancer. Thank you, from the bottom of my heart.

One closing note: I am sure I have forgotten someone who desperately deserves to be thanked. I’ll update this post as names come to me, and if you are a person I overlooked I apologize – please let me know and I will make amends. After administering an appropriate number of dope slaps to myself. 

For now, we are closing the book on these chapters of our cancer journey. Thank you for reading, take care of yourself, and be compassionate with yourself.

April 26, 2020

In earlier posts I have mentioned any number of medical references, technical resources, and practical aids for the maintenance of the physical body when dealing with cancer. In this post I am going to focus almost exclusively on care for the spirit when one is dealing with cancer or other life-threatening disease or when one has a loved one who is dealing with such diseases. I will make a comment or two that might be useful to those dealing with the very definite angst that the COVID-19 pandemic is creating. Most of these resources are available to anyone, although one is specific to Indianapolis, IN.

1. COMMUNICATION RESOURCES. This bit is specific to people dealing with cancer or other life-threatening disease (including COVID-19 in a severe case). 

When you or a loved one is struck with a serious disease there will be tremendous challenges in communication. You will want to communicate some information to a wide group of people, and let them support them support you and your loved ones. And there will be a smaller group of people that you want to interact with in real time who get the unvarnished, news as it evolves status and who in turn can support you when you need it most.

For communicating with a wide group of people there is no tool that we know of better than CaringBridge. The web address is Caringbridge.org. It’s free (runs on donations) and simple. 
You set up a journal, and you write entries in it as you see fit and have time. There are two options for privacy: a) you have a journal and only those people you invite are able to see posts; b) you set up a journal and any individual with an account on CaringBridge can read and respond. These are the people you want to keep informed, when you are comfortable sharing information and as you are comfortable sharing. It includes options that readers can set so they are notified when an update has been posted. And there is a comments section in which the people who have access to your journal can respond. And those responses are often very comforting and heartwarming. It is simply a wonderful tool.

For communicating with a smaller group of people in real time: just pick one tool. In addition to CaringBridge, most people will want a way to communicate with those people that are very close – so close to that you want to be able to tell them in real time “the Doctor came out and surgery went well” or “we just got the CT scans and the results are bad,” and then get responses back also in real time. Pick anything you want, but pick ONE thing. Text, WhatsApp, trained flocks of carrier pigeons. Any tool that you are comfortable with will do. Comfort matters: there may be bad days when you can barely think and want to communicate with those close to you. But pick one technology. When you are stressed to the gills, the last thing you need is to manage a group of people you communicate with by email, another group you communicate with via Slack, another that you text, another that you communicate with WhatsApp. At some point, your closest friends and loved ones have to bend to help you. Poll people for a preference if you wish, but at the end of the day pick one technology that works for you and expect others to adapt. If they care about you enough to be in the inner circle, they will figure out how to adapt to your communication needs. Being able to communicate to those closest to you once isn’t just a need, it’s an essential.

2. BOOKS. I’ve mentioned most of these books before. These three are just critical resources, and I list the books in order of “buy this one first”:

• Everything happens for a reason, and other lies I’ve loved. Kate Bowles. A wonderful book. The appendix “Absolutely never say this to people experiencing terrible times: a short list” is worth the price of the book. Read that first. And if you are experiencing a terrible time, and someone says one of the things on the list to you, you have the right to hit them over the head with the book. But don’t. The book doesn’t weigh enough to hurt as much as a person would deserve.
• To Bless the space between us. John O’Donohue. Another great resource for “right away” when a diagnosis hits. A collection of blessings in the style if the Irish. “For a friend on the arrival of illness” was a Godsend for me.
• Your best year ever. Michael Hyatt. Yeah, kind of an odd thing to recommend. And not for the day after you have gotten bad news. But if you have received a diagnosis that’s really bad, sooner or later there will be a point where you wake up one day and wonder how you are going to live the rest of your life. On that day, this book can help. This is also an excellent resource right now for those who are not directly suffering from COVID-19, but who are suffering from the emotional and mental challenge that the pandemic and our responses to the pandemic.
• Anything published by World Wisdom Press  http://worldwisdom.com/public/home.aspx). World Wisdom Press publishes books covering a diverse set of religious traditions and schools of wisdom. Several of their books can be read like daily devotionals. My favorite of their publications is a book entitled “Living in two worlds.” It is an edited condensation of the multi-volume autobiography of Charles Eastman (Ohiyesa), who was born in the wild in the plains of the west and went on to get an MD and be an advocate for first nations peoples. This book taught me a lot about bravery when I needed that.

3. ONLINE PERIODICALS AND INFORMATION ABOUT MINDFULNESS PRACTICES. Any of the following may be useful to those suffering from acute disease, chronic disease, or who face anxiety and stress in response to the current pandemic:

• Mindful. Mindful is both a web site (mindful.org) and a periodical. The web site is free, the periodical modest in cost. Both offer great advice on how to live your life mindfully and deal with all manner of stress and challenges. It’s not a cure-all, but it’s a great resource.
• Dailystoic.com. Stoicism isn’t for everyone, but there are many insights to be had from a philosophy that focuses much on the distinction between what can influence and what one cannot. At this web site one can sign up for a daily email message to be sent to you each morning with a bit of wisdom from the Stoics.
• Your morning offering. From https://www.morningoffering.com, which is itself a service of an online service called The Catholic Company. No, not a place where you can mail-order a monsignor, but rather a store of merchandise and books intended for those who follow the Roman Catholic faith. Your morning is a daily newsletter of inspiration and Catholic-oriented religious messages. I’m not catholic, and sometimes the daily newsletter is too deep into the particulars of Roman Catholic theology to resonate with me. But often I find the messages helpful and sometimes even inspiring. 
• This is water. The only graduation speech given by famed, and now dead, writer and philosopher David Foster Wallace. A truly great meditation on how we spend our attention and what it means to give something attention. Online at https://www.youtube.com/watch?v=PhhC_N6Bm_s
• http://www.chilel.com. Again, not a periodical. There are many types of mindfulness exercises. I have adopted Chi-lel QiGong, which is a mind / body practice that has common roots with Tai Chi. Chi-Let QiGong is particularly well suited for people with health concerns. I neither know nor care if the cosmology of the ancient Chinese is correct, or if Qi works the way it is thought to be QiGong experts. What I know is that it calms me like no activity other than running, and it is clinically proved to improve health outcomes in the chronically ill.
• https://mindbodystressreduction.com. More general than QiGong, and recently developed specifically to deal with stress of disease, Mind Body Stress Reduction involves many types of thought and body exercise, and is clinically proved to improve health outcomes for those who practice one or more of the techniques recommended. In Indiana a local expert is http://www.lindafbrown.com

4. MUSIC. Whatever music sooths and comforts you, go for it. I could either go on forever, or be very brief. I’ll take the latter approach. Three pieces that move and comfort me particularly when I am feeling melancholy and need a lift are Mozart’s Requiem, Frei wie der Wind by Santiago (https://www.youtube.com/watch?v=sCxURbI2WVE), and If we were vampires by Jason Isbell (lots of versions, but my personal favorite is the one with Chris Thile on “Live from here” available at https://www.youtube.com/watch?v=B8URDdvN_30). And… well, I can’t but mention a bit of opera. Pucinni’s La Boheme IS the best opera ever; I love it, as does Marion. Our second favorite Italian opera is Lucia di Lammermoor by Donizetti. Both remind me of some of the best hours of my life with Marion. Listen to music that helps you, be that opera, folk, thrash metal….  Just whatever helps you.

5. ONE LOCAL RESOURCE IN INDIANAPOLIS. Fairhaven Foundation (https://fairhavenfoundation.org). I cannot say enough about the wonderful people that make this service work. Fair Haven “provides a comfortable and convenient place near the hospital for patients and their families to stay.” We stayed with Fair Haven twice – the second time being when I was having my ileostomy reversed, early in December, when my doctors wanted me to hang around town for a few days after I was released from the hospital. Fair Haven provides apartments for families of patients and patients right near IU Health Hospitals and the IU Simon Cancer Center. But the physical space is not the big deal; frankly we could have paid for a heck of a hotel suite with the money we have donated to Fair Haven since we stayed with them. The big deal is the care. For my ileostomy reversal we found our apartment decorated with a Christmas tree, decorated, with treats and a card. Much more than providing an apartment, Fair Haven made us feel at home in our temporary accommodations in Indianapolis. They gave us not a place to stay, but rather a home away from home.

6. LAST THOUGHTS ON RESOURCES

I hope your life is full of happiness and that you never need to use any of the information in this post. But if that isn’t how things work, and you need help and support, I hope you find the resources identified here are at least half as helpful to you as they have been to me. 

Let me begin this post with a caveat: This particular post presents Craig’s viewpoints. Of the two of us, it is probably the case that Marion has the more spiritual outlook but is the less sympathetic to organized religion.

One of the things I have been asked about repeatedly is how I manage my religious faith and my scientific approach to life otherwise. That today I work in computing in support of research is happenstance. My original plan was to get a Ph.D. in Biology and pursue a career as a Professor of Biology. I believe in facts, laws of nature, and chance. I have spent my whole life in the pursuit of truth about the universe. 

That does not mean I don’t believe in God. I believe that trying to understand the universe is a powerful way to honor its creator. Any religious work of any depth, from any of more than a half a dozen important religious teachings, tells us that the nature of that we call God is beyond our comprehension. I believe that. And I believe there are many sources of wisdom that come to us from many religious faiths as well as our own direct experience of the divine.

I do not believe that the Torah or the Christian Bible are the literal words of that we call by name God. No one who believes in physics can get past the 6th verse of the 1st chapter of Genesis without realizing the writing in the Bible cannot all be literal truth: “1 In the beginning when God created the heavens and the earth, 2 the earth was a formless void and darkness covered the face of the deep, while a wind from God swept over the face of the waters. 3 Then God said, “Let there be light”; and there was light. 4 And God saw that the light was good; and God separated the light from the darkness. 5 God called the light Day, and the darkness he called Night. And there was evening and there was morning, the first day. 6 And God said, “Let there be a dome in the midst of the waters, and let it separate the waters from the waters.” (From https://www.biblestudytools.com/nrs/genesis/1.html). 

At the time Genesis was codified, the belief of the people of the Tribes of Israel was that above us was a giant dome that protected us from the waters that were found above that dome. The rain that comes down to us was believed to be from the water above us, falling to and on us from openings in that dome. We know today that this is simply not literal fact. Above us is a vacuum, not water. 

In addition, were one to believe that the Bible presents a literal history, one must consider the multiverse theory proved and must find its proof in Genesis. Because in Genesis you find the world, and humans, being created twice, in slightly different ways. Of course this is not really proof of multiverse theories. The twice done creation of we humans and the world around us is a side effect of the history of that thing we now call the Bible. The first chapters of that document we now name the Bible wer originally transmitted from generation to generation as an oral tradition. While part of the people of the tribes of Israel were in captivity in Babylon, two versions of the creation story diverged over time. Those who codified the Bible as we know it seemingly could not bring themselves to omit either version, so both are included, in sequence.

So the Bible is not literal fact in a technical, scientific, or detailed historical sense. So what.

The meanings in the Bible are much deeper than literal facts. They represent deep teachings mixed with attempts to make a cohesive picture of the universe and mixed with the occasional bit of human error. (Scholars fairly widely agree that the bit about handling of poisonous snakes is a relatively late addition, not a proper part of any revealed wisdom… not to mention rstupid to actually do.) 

I search religious writings for meaning, not details of mechanisms. My belief in that we call God is based in God’s agency – God’s responsibility for the fact that there is something, rather than nothing. And one of the critical lessons in Genesis is that God’s creation is inherently good. “And God saw that it was good” is repeated over and over, a strong statement about the nature of our earth and a statement that contradicted some of the prevailing religious views of groups in the Mideast.

My belief in God’s agency makes it unnecessary for me to try to search religious wisdom writings for explanations that fully and accurately form a cohesive explanation of the physical world around us. A world view of the physical necessarily comes from the study of mathematics, physics, chemistry, biology, sociology, and the other sciences. And I do not need to understand the details of the execution of God’s interaction with the world. I do not believe that people were created by God literally out of a pile of dust with, say, some water and clay modelling tools. I believe that God caused creation to be, and what we read in the Bible represents the most coherent rendering of that basic belief that was possible to set down 35 centuries ago.

Nor do I need to know how if at all God acts on specific prayers. I doubt that God decides who gets to live by taking votes via prayer. I know that praying does the pray – er great good, and the knowledge of others praying for me has done me great good. Both are ways to be mindful of the Divine. Beyond that, maybe I’ll find out how the whole prayer thing works in detail someday.

Who is and/or what is God? I don’t know, but I know I have experienced things in my life that cannot easily be explained by the simple laws of physics and the more complicated laws and probabilities of chemistry and biology. And in my searching through the evidence and wisdom writings about God’s agency I find that the messages are pretty simple, even if their execution is not: do unto others as you would have them do unto you. (And I am sure Kant was quite proud of himself for deriving this basic formula without reference to revealed truths; good for him.) This guidance applies even if others are different than you are. Simple to say, hard to do. But I’m trying. I hope someday everyone will.

A great gift has been given me. I am alive when I might easily not be. I will spend the rest of my life trying to make good use of my time. I am not yet to the point where I get through a day without thinking about cancer. I am to a point where I get up in the morning on almost every morning and view today as a gift. I will spend the rest of my life trying to prove that I can make good use of this gift time that I have received during every moment of “now,” however long my “nows” last.

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:
  • Breastcancer.org. 2018. How to Do a Breast Self-Exam: The Five Steps. (2018). http://www.breastcancer.org/symptoms/testing/types/self_exam/bse_steps
  • Skin Cancer Foundation. 2018. Step by step self-examination. https://www.skincancer.org/early-detection/self-exams/
  • Testicular Cancer Society. 2018. Testicular Self Exam. (2018). http://www.testicularcancersociety.org/testicular-self-exam.html
• 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.