Our Cancer Journey – Part 2

March 9 2020

2018 – starting our second year with cancer

2018, our second calendar year of living with cancer, seemed to begin pretty well. As of 1 January 2018 I had learned to work my reconfigured insides pretty decently, after having had my ileostomy reversed in December of 2017. My odds of being o.k. in the long run seemed good. I was possessed of a truly irrational level of optimism about the future. And every day I walked past three of the most wonderful gifts I have ever received – a limestone carving from younger granddaughter Madeline that said “Opa Survivor,” a framed letter from elder granddaughter Katja, and a cardboard life-size cutout of Rocket Raccoon. I felt about as invincible as Rocket.

I began the year by registering my sweetie Marion Krefeldt and myself for the Indy Mini half marathon. We have run that race together for many years. I signed up for a season pass for the DINO (Do Indiana Offroad) trail race series – a series of trail races I have run since 2015. My goal for the year was to finish in the top 20 of the points race within that series. (One collects points on the basis of finishing place in the several races of that series). I purchased tickets for Marion and myself for Donizetti’s Lucia di Lammermoor at the Metropolitan Opera in April. Lucia di Lammermoor is Marion’s second favorite opera, behind La Boheme, which we had seen in 2017I made plans to attend the International Supercomputing Conference held in Frankfurt, Germany – a very important conference in my line of work, and a conference that I had missed only three times since the first time I attended in 1997. (One of which was 2017, when being treated for cancer made it impossible for me to travel). As a sign of my confidence I purchased absolutely killer tickets to a performance of Bellini’s opera Norma to be performed by the Frankfurt Opera. The Frankfurt Opera is one of the best opera companies in Germany, and Norma is another of Marion’s favorite operas. In other words: I began the year half in the belief that I was just going to be o.k., and half in hope that I was just going to be o.k.

Marion was more circumspect. In 2018 we both continued to see a psychiatrist and a therapist, and Marion refused to let go of her concerns about my health. But she did finally let me organize a celebration of her 60thbirthday. Her mandate was that I had to be cancer-free for 6 months before she would allow that celebration. This did matter in practice. Her actual birthday was early in December, and we had to wait till the 13th of February for a party – 6 months after a clean CT scan, and a year to the day after the colonoscopy that initially revealed my cancer. And we did it up big. Marion had previously expressed a desire for an e-bike. I worked for months to prepare for a celebration that included about 40 people and included crowd-sourcing her birthday present. I researched e-bikes and found out that one particular model of the Dutch brand (Gazelle) was widely recognized as the best e-bike in the world. There were no local dealers. I talked a bike dealership in Indianapolis to become a registered Gazelle dealer. A large number of friends and colleagues contributed to the purchase of Marion’s e-bike. In the end family and friends paid about half the price, and I paid the other half. And a bit of excess was donated to one of Marion’s favorite local not-for-profits – Women writing for (a) change (https://www.womenwritingbloomington.org). On the evening of the party, all of the guests hid in our garage with Marion’s bike and she was REALLY and very happily surprised. February 13 would prove to be the high point of the year. 

As the spring wore on, I continued to thing all would be well. I ran, prepared for the first DINO race of the spring, and generally tried to get on with my life. But Marion noticed little things. Skin rashes that did not go away quickly enough. The color of my skin was a tad blanched. And yet I worked toward my first CT scan of 2018 completely confident all would be well. That scan was set for 5 April. It was not o.k. There was a “hypodense” mass in my liver, right on the border of where my liver had previously been resectioned.  (“Resectioned” is cancer-doctor-speak for cut apart to remove cancerous tissue and then put back together as best possible with what was left). There was some back and forth about whether or not it was a tumor or an artifact of the scan, and whether it was cancerous or benign. All of this happened when I had been so stupid as to schedule a trip to New York to see Lucia di Lammermoor the weekend after my CT scan. I expected to celebrate good news. We went ahead anyway. It was hard. We both cried – gushed really – during the performance. But it was a wonderful performance. And this was a lesson: go ahead and live life even in the face of uncertainty and worry about mortality. We are all going to die. It’s just that a cancer diagnosis makes one think about it as a clear and present reality, not a far-off abstract concept. But Pretty Yendi in the role of Lucia in Marion’s favorite Donizetti opera: that was both concrete in the here and now and a celestial musical and emotional experience. 

The way to find out if what I had was an artifact or a malignant tumor was simple: a biopsy. That was scheduled for the next week. Like usual, my wife and my son were by my side. Interestingly enough the way to get a sample from the problematic spot was to knock me out, stick a probe into my stomach, and then poke through the stomach wall into my liver. Before the procedure, I told the MD doing the work that I expected the results to be bad. After I woke up from anesthesia the doctor walked in and said that we needed to wait for the final report but that the initial analysis of frozen samples looked bad. I looked at him and said “We both know that tissue that when the initial results look bad, the final results don’t come back o.k.”

My cancer was back. Marion cried. Our kids and grandkids cried. I was numb. I think. I am not sure I remember clearly. Part of me, I am sure, felt that somehow I deserved this. That this was my punishment for not being a good enough person, for not being careful enough with my health.

Surgery was scheduled. Dr. Michael House was once again to be the surgeon – he is one of the best liver surgeons in the Midwest. The surgical plan was simple, to the joint satisfaction of me, Marion, and our surgeon: be aggressive. Get rid of it. Take out enough liver that we were sure we had all of the cancer. On May 4 of 2018 I was wheeled into the operating room with four-ish lobes of liver, and was wheeled out of the operating room with two lobes of liver. As usual, the nurses and my wife got me up and around to walk at the end of the day on the 4th. I woke up on Saturday morning the 5th of May and could hear the start of the Indy Mini half marathon outside. It really pissed me off. I could hardly walk a lap around the floor of the hospital. I didn’t go to the International Supercomputing Conference in June, missing it for just the 4th time in my career since I started going in 1997. As a result, a friend got great tickets for Bellini’s Norma at the Frankfurt Opera … courtesy of me, my overconfidence, and my cancer.

On the 5th of May I was forced to think back to things I had said during the Good Friday service at my church just a bit more than a month earlier. In that service, a group of people had each focused on the last things Christ had said as he neared death. My assignment was to speak on the sentence “I thirst.” The end of what I had to say was as follows:

 I thirst. I thirst that my next checkup will be good.

I long for something that I know will not come. I long for surety about my future, and what we learn from Christ’s example and from our own experiences is that there is no surety to be had for us in this life other than the surety that it will end.  Tomorrow is promised to no one. 

What we are promised is that we will thirst and we will live this life in longing, and in the end we will die. 

So now I pray not for water, but for the strength to handle thirst.

My plans and hopes for 2018 were in shambles. Marion had done her best to moderate my hopes. I had been overconfident. Little did I know how much I would need the strength to handle thirst. The bad news for 2018 wasn’t over.