Our Cancer Journey – part 1

13 February 2020

I was diagnosed with colorectal cancer on 13 February 2017. This happened during what was expected to be a straightforward colonoscopy. On 14 February came the news that the cancer was already advanced to Stage IV. As my wife Marion put it, the WORST Valentine’s Day ever. This is our story. We are sharing it partly to be of use to those who are healthy, in the hopes that it will help you stay healthy, and partly to be of use to those dealing with cancer or other serious diseases, in the hope that this may help you deal with your situations. We also hope to share some news about how treatment of cancer is changing right now, every week of every month. 

This series of blog posts is titled “Our Cancer Journey” because it’s about what has happened to me, my wife, our family, our friends, our co-workers. Cancer does not happen to one person. And it’s not an event. It’s a journey into a future that can often be scary and uncertain.

Before I (Craig) go any further let me acknowledge that there are many diseases that are far worse to have than cancer, and many cancer patients and families of patients who have had it far worse than my wife and I have had to deal with. But my wife and I are competent to tell only our story. That is what we intend to do. Some of this story is generally applicable to anyone facing diseases, some applicable only to cancer, and for that matter some right now at least only applicable to colorectal cancers. Still, my wife and I hope that this information is helpful to you. 

I have always been considered to be pretty healthy. I exercise a lot. I’ve never been a smoker. I have typically maintained a healthy BMI (Body Mass Index). I never drank in excess (rarely beyond the minimal levels I was driven to by some of my faculty colleagues at Indiana University, where I work). I come from a family with no recorded history of cancer save two cases involving heavy users of tobacco products. When one considers the standard lists of risk factors for colorectal cancer, I rate very low on the main criteria. On top of that, I was thoroughly checked over in 2011 when I was being considered as a kidney donor for a family member. I was screened head to toe – including a CT scan for cancer which showed that at that point I was free of cancer.

In perhaps late 2015 I realized that my running workouts just weren’t of the quality I expected. There was nothing specific I could point to. But workouts just didn’t feel right, and neither did races. People that I should have been able to beat easily were beating me. Sometime in 2016 I noticed that I was going to the bathroom more often than I was used to. When I thought about this at all, which was rare, I wrote it off to stress. 2016 was indeed a really stressful time. Then sometime after New Years of 2017, my wife Marion said “we need to talk.” My wonderful wife went on to say, “You go to the bathroom too many times a day. You need to see a doctor.” I saw my personal care physician, who thought a colonoscopy was worthwhile but who also agreed that, based on my symptoms, the one thing it probably was not was colon cancer. In particular, I had not lost weight, and my hemoglobin levels were just fine. 

I chose to do my colonoscopy without anesthesia because I really dislike anesthetics. As my colonoscopy was started, I could watch the same screen the gastroenterologist was watching. Just a few seconds into the procedure – certainly less than a minute – I saw something on the screen and said, “Boy, that doesn’t look happy.” The doctor’s reply was, “No, that’s cancer.”

In the following sections we will present the spouse’s view – Marion’s – and then mine. Marion’s first because she has the clearest perspective on what actually happened. She watched me when I was on pain killers, when I was asleep, when I was in so much pain that the pain itself fogged my perception and memory. Then my perspective. 

The caregiver’s view – Marion

It is hard to understand how serious health issues can be unless you have experienced them yourself. But to give a sense of what the consequences of illness are, let me pick up the story from this side of this experience as of the 13th of February 2017.

February 13 of 2017 was the most horrible day in all the years Craig and I have shared. 

I remember sitting in the waiting room. The TV was playing some sort of soap opera, I think. The hours felt like days. I read something on my Kindle. I have no idea what. 

A staff member fetches me to bring me back to Craig’s room. She does not look at me after calling my name; she just looks at the floor. 

I sensed a shadow. Please, oh please, just let it be something simple. 

Instead, the first words out of Craig’s mouth were, “I have cancer. I have colorectal cancer. I am so sorry.”

I remember going numb, just numb, before feeling this deep sense of despair. I inhale to the lowest part of my body, but I cannot exhale. Probably never again. 

Nevertheless, the despair gives way to fear. Pure fear. The kind that makes your legs buckle while you are trying not to throw up. 

After further testing, and meeting with an oncologist in Bloomington the next day, Valentine’s Day, I hear numbers: Stage IV, 20\%, 5\%, 5 years. (20\% chance of Craig being alive after 5 years; 5\% chance of being alive and disease free).

I am sure other things were discussed, but I have no real recollection of the conversation, just the numbers. I left there thinking: I hate this place. I HATE this place. It smells in here. The lights are buzzing. The carpet is dingy. I’m not sure if any of this was actually the case. But better to focus on that than the message. At least for the moment.

I feel hot and cold. I cannot sleep. Cancer. Craig. I will be alone. 

I have no idea how to make that work. Never mind about me. What about our children? While they are adults, they dearly love their Dad, teenage years notwithstanding. Then there are the grandkids, who adore their Opa. 

I think of all the crazy hours Craig and I have worked, but in the last few years, particularly Craig. 

From my perspective, his health deteriorated slowly, much like the fable of the frog in the boiling pot. I rewind our conversations concerning his work schedule and his health. High blood pressure, high blood sugar, digestive issues. I would mention the symptoms and the increase in severity frequently. Our conversations followed a pattern, they were predictable. 

There is a grant proposal I must write, a paper I must edit. A talk I must prepare, a conference I must attend. A personnel issue I must solve. I knew at some point, someone, something would lower the boom. Well, cancer does that, and quite immediately and effectively.

Somewhere along the line, my fear turned to fight.  Fight with a thick layer of cortisol and adrenaline. The kind that makes your head buzz and your tongue feel thick and makes you itch all over. 

Nothing makes it stop. Not sleep, not wine, not showering, nothing.

Call someone, I said: DO SOMETHING. Don’t just stand there. We are going to Indianapolis, or MD Anderson, or Dana-Faber, SOMEPLACE. 

How DO we tell our kids? We procrastinate, that’s how. We tell ourselves that we need to digest this information before we can talk about it. Then we procrastinate some more. 

I tell our daughter. She just sits down on the floor in her kitchen and weeps. Craig tells our son. He is completely distraught as well.

Why Craig, they ask. Why not some rapist, murderer, or terrorist? Cancer does not discriminate. It does not care if you contribute to society or take away from it. Cancer is very unscrupulous and smart, very, smart. Smarter than any of us, we say.

Running buddies. I have running buddies. The 17th of February is a Friday. We run on Friday mornings. The car pulls up to the house to fetch me on the way to the trail. Pull around the corner, I say. I do not want Craig to see me fall apart. I share the news, share the numbers. 

Were we all silent on the drive to the trail? 

I just remember the numbers, and that the odds are Craig is going to leave me. 

Running is good for the soul. Running with friends is good for everything. Our little group of 3 or 4 run ladies has run through a divorce, death of several parents, and a case of multiple myeloma. We add colorectal cancer to the list. 

Anyway, by now Craig and I have a plan. 

We are going to the IU Simon Cancer Center. I don’t know if it will be better or worse, but it will at least be different. Maybe there the lights will not buzz, the carpet will not be dingy, and the numbers will be better. On the other hand, maybe we will get there and they will tell us to go on a nice long vacation.

Craig drives. I cannot. Actually, I remember thinking: I cannot do this. I cannot do any of this. However, about halfway to the Simon Cancer Center it occurs to me that I really do not have a choice in the matter.

I remember seeing this card in a Starbucks, the caption of which was, ”Yeah, life sucks sometimes. So put your big girl panties on and either fake it or make it baby cause ain’t nobody got time for that. ”

I decide, yes, I can fake this.

On the drive into Indianapolis, I make it a point to enjoy the view of the river. For the first time in days, I notice that the sun is shining. Maybe it has for days. I have no clue. 

The oncologist says: I am glad you came in here while we still have something to work with. At that very moment, I moved from faking it to making it. I will become the best caretaker that I can be. I felt like I was just promoted to a new job with high stakes, for which I am not the least bit qualified. Since being promoted has happened in my professional life, with a good measure of success, I have confidence. I got this, you damn cancer you!

With the help of a clinical psychologist, a psychiatrist, our children, my family and friends here and abroad, I started to re-enter my life. Slowly, tenuously, but forever looking over my shoulder. Always anticipating bad news or complications. 

In retrospect, I think I also became somewhat agoraphobic. I only left the house when I needed to. I only read my email every few days, not knowing how to or not having the energy to answer all the well-wishers. This was probably not the best approach, but most people stuck with me.

The first complication in Craig’s treatment came just before our anniversary. As a side-effect of Craig’s chemotherapy, the tumor tissue became so inflamed that it caused a complete blockage of Craig’s colon. We needed to make it from Bloomington to Indianapolis, as soon as possible. It was 4:30 in the afternoon. Indiana State Highway 37, which connects Bloomington and Indianapolis, was bumper to bumper during miles of construction. I got us there within 55 minutes, driving through and around orange cones and sometimes in the median. I thought if the police stop me, good for us, they will give us an escort. I don’t think I have ever driven this recklessly in my entire life. On our wedding anniversary, April 21, Craig had a colonoscopy in which a stent was placed in his colon to hold it open. (Worst anniversary ever.) The same side-effect happened after the radiation treatment, but we knew more and the event was much less dramatic.

Somewhere in the summer, we received the good news that, since the tumors had shrunk a lot Craig’s surgery would be in July rather than in October. 

Where to stay for eight days? Craig’s surgery was the Friday before the NASCAR Brickyard 400 race in Indianapolis. Almost all hotel rooms are booked. Some nondescript hotel by the airport, that’s where we stayed.

Our daughter joins me. So does my mother-in-law. Our son had scheduled a family vacation. Go, just go. Cancer cannot take everything away from us, we say.

The night before the surgery we are in the hotel room. Craig falls in the bathtub. I go back from making it to faking it. Not very well either.

The surgery is long, eight hours instead of three, it turns out. The estimate that Craig had for 3 hours was just for the liver surgery, not the whole procedure. But at the end the surgeons are optimistic. 

On day 2 after surgery we walk, and we have walked most days since. There were 8 weeks of chemo sessions left after surgery. Craig rang the bell in the infusion center – signifying the end of his chemotherapy treatment – on the 11th of October. The preceding 9 months had been awful, just awful. 

It is so hard to watch a person you love be afraid and suffer so much physical pain. I probably remember the pain moments better than Craig. Pain and painkillers both produce a pleasant brain fog. 

The next surgery was November 30. The purpose of this surgery was to reverse the ileostomy that Craig had been given during his cancer surgery in July. In comparison to everything else, the ileostomy reversal seemed relatively minor. We had to stay close to the IU Cancer Center in case there were complications. This time there was no hotel room available either because of some convention, but our social worker connected us with Fairhaven – an organization that provides apartments close to campus for cancer patients. They provided us a nice small apartment, just a short walk from the hospital. We celebrated my 60th birthday there. In 2017, there was not a single celebration or holiday, other than Thanksgiving, that was not impacted somehow by cancer.

2017 was also the first year in 35 years that we were in Indiana all year. I was not able to visit my parents, who live in Germany and are in their 90s. And my dad can’t hear, so phoning is a challenge.

I have always heard that being a caretaker is harder than being sick. I do not know about that. But it sure is not a cake walk. The sacrifices do not become clear until the immediate crises are over. We are currently in that territory. It has become clear to me that no one can be this sick by themselves. And no caretaker can be well throughout this process without professional help. There is no shame in that. 

I have had to rely more on my family and friends for support than I ever thought possible. That does not always feel comfortable. It is counter to my nature. I am really not good at any of this.

I must do my best to enjoy the here-and-now for what it is, and keep my fear of what may be lurking in the next moment from stealing time away from us. This sounded like a platitude at one time. Now it is my mantra.

Am I a good caretaker? I don’t know. Probably no better or worse than anyone else in my situation. A brochure at the cancer center said I would embark on a rewarding journey. Seriously? Who writes these things, anyway? A rewarding journey for me involves a beach vacation or a trip to Italy. 

Caretaking is life-disrupting, frustrating, painful, and heart-wrenching. It is time-consuming, exhausting, frightening, and depressing.

I have learned a lot about how medical institutions are run, what you need to say to get your insurance company to actually pay for the coverage you bought, and the many – many – loopholes and exceptions in medical insurance coverage.

I have filled out dozens of forms, signed documents without knowing what they say, and on more than one occasion wanted to storm into the hospital kitchen with a plate of food they delivered that was filled with foods that Craig cannot eat. 

But would I ever trade my responsibilities? Certainly not.

Every day I get up and my silent promise is that I will put one foot in front of another and continue to share this journey with Craig. 

The patient’s view after the fact – Craig

When I was first diagnosed, I did not fear dying per se. What I felt was guilt at having been stupid enough to have not done something to somehow have caught this at an earlier stage, guilt about the possibility that I would die without keeping promises I had made to my wife of more than 30 years, guilt about the pain I was causing her. I trust Marion’s account of what happened during 2017 more than I trust my own. Pain is itself a great anesthetic, and other anesthetics were involved at several points of the year. For those who want a running summary of what this time was like for me, I maintained a blog which is available at https://www.caringbridge.org/visit/craigastewart. Anyone who reads my blog and Marion’s account of 2017 will wonder if we are describing the same set of events. We are. My description is through the lenses of Pollyanna-ish-ness, faith in my wife and my medical team, and a determination that I was going to act as if it was all going to be okay in the hope of a self-fulfilling prophecy. In other words, complete self-delusion. 

As I was going through treatment, the following things stood out for me. First, how much my wife actually loves me – and likes me. At one point early on, when I was trying to calm Marion about the implications of my health, I pointed out to her that early on – in my early 30s – I had purchased a life insurance policy that was sufficiently generous that it would ensure she was able to care for herself financially (and then a bit). Her response: “I don’t care about the money. I DON’T WANT THE FUCKING MONEY.” 

Treatment was no fun, but it helped me put my situation in perspective. I listened to couples who did not get along well, and realized how lucky I was. Once I heard one person say of their spouse’s treatment, “I want this to be over within a year.” Looking at the condition of the patient and looking at the spouse made it clear that what was meant was not that the partner with cancer be cured within a year. I received chemo one day next to a girl who was probably 16, probably didn’t weigh as much as 90 pounds, and whose chemo was clearly not working. Whatever else happens to me, I have had more opportunities in my life than that girl will ever get to experience on this earth, if she is even alive yet today (which I doubt). 

But I was stressed. Even on very mild antidepressants I was stressed. I felt a tremendous feeling of isolation. As I walked around the voice in my head was a constant stream of “look at those people. They all have a timeline. They are all going to die just like me. But I know if and I’m going to die sooner or later. They get to walk around like it isn’t going to happen.”

There were also many blessings. No change is so good that there isn’t some bad mixed into it. And no change is so bad that there is not some good mixed into it. There were many silver linings in my experiences with cancer. First, just an outpouring of love and care from family, friends, and co-workers. I saw a psychiatrist and a therapist regularly, and that helped me deal with what had been longstanding issues in accepting myself as good enough. There were many tremendously wonderful and surprising expressions of care. The Finance Office of the part of Indiana University that I work for sent me a care package. Not just a care package. The biggest care package of any that anyone sent me. The freaking accountants sent me presents! And not just presents. From the practical (drops for chemo-induced nausea) to the fun (some really crazy books) to the beautiful (recordings and audiobooks). I received cards and letters from friends far and near. The cards and letters were perhaps the most beautiful gifts of all, since I could read and re-read and re-re-read them when I was feeling down. I acquired new friends – many of whom had cancer, were cancer survivors, or were friends or relatives of someone who suffered from cancer. I received tremendous amounts of wisdom and love from old and new friends and from many relatives.

In all of this I was presented with many opportunities to help cheer others up. I won’t say I always got it right, but I always tried. 

There was bad as well. Cancer sucks. Some relationships I had believed in came to an end. Some friends and some relatives simply stopped communicating with me. I don’t know why, nor do I hold it against them. I know that sometimes it is hard for people to stay in touch with cancer patients because this reminds them of their own mortality. In other cases, I think I just stopped being useful to some people who deal with life on a transactional rather than relational or religious basis. Transactions with me were no longer likely to be profitable to others. I do not hold anything against those who unfriended me. I do maintain the memory of who cared about me and who cared about what I could do for them. All people deserve prayers, good will, and kindness. But those who do not care for me need not get more from me than that.

Through the early phases of my treatment with chemo I stayed active – walking and when I could running. Activity took a nosedive when I had my first surgery.

July 20 2017 was surgery to remove the tumors from my colon and liver. I woke up – as I knew I would – in a lot of pain and with an ileostomy. A lot of pain. A fair chunk of my liver had been taken out, and liver surgery hurts. The ileostomy was relatively straightforward as an adjustment in my life. The end of my small intestine had been sewn to the skin of my belly and there was a little bag glued to my tummy to catch what otherwise would have drained into my large intestine. The reason for doing this was to prevent there from being any leaks from my colon into my abdominal cavity where the expert surgeons had sewn together two pieces of my insides that were not the same diameter (the proximal end of what was left of my rectum and the distal end of a significantly shorter colon). As one of my doctors said, with characteristic understatement, “leaks in your colon are bad.” The ileostomy created a bypass for food to leave my body while my newly reconfigured colon and rectum fully healed where they had been sewn together.  Six more sessions of chemotherapy after that, some time to let my blood numbers to snap back where they belonged, and I was ready to have the ileostomy undone and have my insides reconfigured closer to the original arrangement. One of my doctors said to me “I bet you can’t wait to get that done.” In point of fact, I thought about it a lot. I seriously thought about just keeping the ileostomy as a reminder of how my life had changed, and how I had to change in order to keep having a life. After all, I had managed to run, swim, and generally get around through life with a bag glued to my belly. (And for those who are dealing with an ostomy of any kind, let me recommend the Stealth Belt – https://www.stealthbelt.com/ostomy-belt?gclid=EAIaIQobChMI0fnVrIfN5wIVUPDACh2YWADyEAAYASAAEgK_AfD_BwE. The Stealth Belt resulted in a dramatic change in my quality of life with an ostomy).

In the end, however, I opted to have the ileostomy undone, which happened, as Marion said earlier, on November 30 of 2017. Near the end of a year that started with a New Year’s resolution to qualify for the Boston Marathon. The year ended with prayers that my cancer would not come back and that I would be healthy. It ended with me scaling back my activities at work and scaling up my appreciation that my wife, family, and friends really did like me, no matter how unworthy I felt of those feelings. The year ended with me having a chance to keep promises to spend more time with my wife and less time at work. The year ended with better odds than when we started. A CT scan shortly after my surgery in July had shown no evidence of any remaining cancer – at least as observable in a CT scan. Tissue samples taken in my colon at the time of my ileostomy showed no evidence of any cancerous cells. The odds were 2 out of 3 chance that my cancer would never return and I would just be able to go on with the rest of my life with hard lessons learned and a somewhat shorter GI tract than God intended. 

This is the end of the story of our first year experiencing cancer. As we put it in a talk my wife and I gave at this time, “this is not the end of our story, just where we are now.” It turned out indeed not to be the end of the story. 

More of the story … soon.

Craig A. Stewart and Marion Krefeldt