What Happened (11/11/24)

 To understand where we are now, you really need to go back to Joyce’s childhood. When her mom was 42, she was found to have Ductal Carcinoma in Situ (also known as stage 0 breast cancer, 10-year survival 98%). Typical treatment would involve a lumpectomy, but Ellie wasn’t messing around. Before my co-intern Peter Attia made it cool to aggressively attack each and every risk to longevity, she signed up for a mastectomy. Still not sure how she found a surgeon who was willing to offer that kind of aggressive approach, it undoubtedly saved her life and she is cancer free today. Many people don’t appreciate how meticulous Joyce is when it comes to medical care, particularly prevention. In the past 15 years, neither Lyle, Lucia, or I have been exposed to a single ray of ultraviolet radiation without having first applied a generous portion of SPF 50 to our entire body surface area. A mosquito borne illness would never have a chance in our family, since the amount of bug spray that we are required to apply before going outdoors could kill a chihuahua. She started getting mammograms at age 30. All imaging studies have limitations, so at the first suggestion of any abnormality in the context of dense breast tissue we went after it with a biopsy. The first was in 2022 (right breast)—stone cold negative. In January of 2024 we both enrolled in the Mayo Clinic’s Executive Health Program which is designed to provide a comprehensive strategy for detection of any risks which could impact on longevity. In my opinion, this program represents the best option for quality medical care that has been available to humans for the past 2,000 years. Part of the workup included a breast MRI, which was completely negative. (As I am writing this we just got the read on a follow up MRI from Friday which is also negative). Mammography showed some calcifications around the biopsy clip which were indeterminate. We opted to pursue early follow-up at six months, and in June these had increased slightly in size. In addition, there were some stable calcifications in the left breast. She immediately underwent stereotactic biopsy of three different areas, and conversations with the technician were reassuring that the needles had hit the bullseye in terms of getting the tissue from the regions of the breast that were most concerning. The pathology specimens were reviewed at two different elite health systems by independent reviewers: “Negative for atypia or carcinoma.” I should mention that having been given the cheat codes from my mother-in-law, we were already considering the option of prophylactic mastectomy as early as January. I had done my homework and identified a breast surgeon at MD Anderson that we planned to see in April. This did not happen for a couple reasons: (1) The extensive genetic testing that we had completed as part of the Executive Health physical did not reveal anything that was a dead ringer for an indication (i.e. BRCA). It likely would have been very difficult to persuade a surgeon to pursue that kind of aggressive procedure in the context of the existing risk/benefit profile. (2) Joyce had been experiencing pain related to a 9 cm ovarian cyst. This was removed laparoscopically at Vanderbilt in June, and thankfully was found to be benign. With the data we had between January and June, it made sense to address the symptomatic finding first with the intention of revisiting the breast findings at the earliest opportunity.

I realize this is a lot of boring detail, but I include it because I think it is very important to understand that what happened here was not the result of an avoidable tragedy. This immediately raises the first of many philosophical questions that we have had to wrestle with, and it is one that I don’t think the human mind can fully comprehend. Do we have control over our destiny, or are we living in a world of determinism? Having read all 1,472 pages of “War and Peace” I can tell you that while Tolstoy provides some fascinating discussion on this topic, I never quite got the answer I was looking for. Aside from the Bible, which has been my playbook for navigating life for as long as I can remember, one resource that I have drawn on in trying to understand this kind of random and senseless tragedy has been Tim Keller’s book “Walking with God through Pain and Suffering” which I will refer to simply as “TK” in any future references. Keller paints two extremes between the Greek legend of Oedipus (who even knowing the tragedies that lie ahead is unable to prevent them) and another classical legend, Marty McFly (“Your future is whatever you make it”). In Keller’s view, both of these perspectives are 100% accurate: “The doctrine of the sovereignty of God in the Bible has sometimes been called compatibilism…God’s plan works through our choices, not around or despite them…God works out his will perfectly through our willing actions.”

Having been given a clean bill of health in June, our next encounter with physical illness came in early September. Everyone in our family (other than Tina, whose skeleton is composed of Adamantium like the Wolverine) and everyone in our office came down with a very nasty variant of COVID. Obviously, this was in spite of the fact that Joyce had previously determined the exact moment when we would benefit from getting a vaccine booster and coordinated the administration to all family members. It took us several weeks to recover from that, and Joyce was no exception. On September 22, we took the tram to the top of the Jackson Hole Mountain Resort at 10,250 feet of elevation and descended on some gnarly trails to the base of the mountain. Although we were slowed down at several points by a black bear that kept following us, Joyce’s stamina was not an issue. We didn’t make it out for another “stress test” until October 26, when we climbed up to the iconic “Delicate Arch” near Moab, Utah. Halfway up the hike, it was obvious that something was not right. Joyce was struggling and very short of breath. We briefly discussed the differential diagnosis and resolved to initiate a workup on Monday. One of our colleagues at EIRMC was kind enough to get her in right away, and the initial set of labs was pretty normal aside from an elevated D dimer. Pulmonary embolism can apparently be a sequela of COVID, so we immediately proceeded to obtain a CT scan. As any good former Halsted resident would do, I spoke with the radiologist soon after the images were uploaded for review. Good news! No PE, but there does appear to be a right lower lobe pneumonia, and a bunch of enlarged lymph nodes which one would expect in light of that diagnosis. This is what we had hoped for and expected. Now all I would have to do is convince my dutiful antibiotic stewardship obsessed ID doctor to look the other way while I killed those bacteria with a bunch of medications that I can’t even spell, starting with a “Z pack” (which I can spell). Several minutes later I got a call back from the radiologist. He was seeing lytic lesions in a bunch of vertebral bodies. Denial is the first stage of the grieving process, and even though I knew exactly what this meant I had no difficulty persuading myself that we were on a great adventure to discover some obscure infectious agent that was easily treatable once we completed a workup—probably Histoplasmosis. An appointment with an oncologist the next day took a little bit of the wind out of my sails, but we proceeded with a biopsy with full expectation that it would be negative. At the same time, there was no getting around the possibility of what this “might” be. We updated our immediate family members so that they could enlist in the effort to discover the answer to this mystery. On the morning of Friday, November 1, I got an unexpected text from a friend who is a heroic recent cancer survivor, and it seemed like the right thing to do to bring her on board as the first member of a support group that would eventually outpace the cancer itself in its ability to grow and metastasize. She gave me the phone number of her oncologist, who is an extraordinary man and also a deacon at the church we used to attend in Rochester. He made arrangements to see us first thing on Monday morning, and we were reassured that with the knowledge that we were about to enter the Gonda building, epicenter of modern medicine. Over the weekend, Joyce’s condition began to deteriorate precipitously. Back pain, fatigue, and respiratory difficulties progressed to the point where she required a wheelchair to travel to her appointments by the time we arrived at Mayo. First item on the agenda was a PET CT, which would help us target one of the “hot” lymph nodes for another biopsy. Time seemed to stand still while she was undergoing the study, and in fact the clock in the waiting room had actually stopped. After about a half hour of waiting in limbo, I received a call from the pathologist in Idaho. The biopsy results were back. As I had hoped, it didn’t look like a lymphoma. As I had dreaded and feared, it was looking more like a carcinoma. It’s hard to even describe the wave of emotions that poured over me in that moment. In the space of a few seconds, every single thing we had imagined about our future was now gone. In its place was something even worse than an alternative reality—complete darkness and uncertainty about what even the next five minutes would bring. In that moment, I found a very small amount of comfort in knowing that for the rest of my life I would no longer have to be burdened by my own selfish interests. Whatever dreams I had for my own life could now be released as I prepared for the task of helping Joyce, Lyle, and Lucia through a nightmare that none of us could have even imagined. I was completely overwhelmed with how I was going to approach the very first step on this long and painful journey—breaking the news to Joyce. I thought about all the places we could go to sit down where I could calmly prepare her for the unbearable news. Perhaps the café where we sat down for coffee after learning that there was a 50/50 chance that our 4th pregnancy would actually materialize into a live birth. Maybe by the piano where someone was playing “It is Well With my Soul.” In the end, when she came out of the scanner I was a blubbering basket case and I just blurted it out as we were getting on the elevator. Watching her reaction is still the hardest thing I have ever had to do. While I could clearly observe the tsunami of emotions that were wiping across the face of a woman who rivals Elizabeth II for her stoicism, she only responded with one word: “Shoot.” It was like watching an act of terrorism. We immediately returned to the office of the oncologist and he confirmed that the working diagnosis was Stage IV Lung Cancer (5 year survival 0%), and at that point there weren’t any dry eyes left in the room. He prayed with us, and somehow in that moment of absolute darkness there was a flicker of hope. Not enough light to even make out any of our surroundings, but more like the knowledge that somewhere in the universe there was still such a thing as light. We completed a long day of appointments and returned to my parents’ property where we had been staying (a gothic barn that has been rehabbed into a living quarters that you might see on HGTV). As we weeped and prayed together, my phone rang again. The pathologist had completed more of the staining on the specimen, and it was looking more like breast cancer (5-year survival 25%). You have no idea what a difference it makes finding out that you might have years left with the love of your life rather than only weeks.

In the days that followed, we completed one of the fastest cancer workups in the history of oncology. When repeat biopsies confirmed the diagnosis, we found another source of strength in knowing that the Medical Oncologist who would be quarterbacking our care was a dear friend from our years living in Rochester. Nevertheless, it seemed as though each time we would ask God for a bit of good news, it seemed as though the door was slammed in our face. Brain MRI showed metastatic disease. Spine pain progressed to new pain in the ischium that made it painful for her to sit in a chair. Estrogen receptor staining isn’t as strong as we originally hoped. This brings us to the next philosophical question that I think we are all asking: If we’re praying to a loving God, where is he in our moment of great need? This is a big subject, but I think the story of Joseph is a good place to start:

The basic story (Genesis 37) is familiar to most of us and watching Donny Osmund perform the role as a high schooler in Minneapolis was my introduction to Broadway theater. But there are some nuances that Tim Keller brings out that are often missed. Specifically, the favoritism that Jacob showed to Rachel’s oldest son had resulted in the epitome of all dysfunctional families and was on its way to turning Joseph himself into one of the world’s most toxic narcissists. After Joseph is sold into slavery and then thrown in prison, God seems to be absent from the narrative. As TK puts it: “Unless every one of these little events had happened just as they did—and so many of them were bad, terrible things—Joseph would never have been sent to Egypt. But think how things would have gone if he had not gotten into Egypt. Enormous numbers of people would have died. His own family would have died of starvation. And spiritually, his family would have been a disaster. Joseph would have been corrupted by his pride, the brothers by their anger, and Jacob by his addictive, idolatrous love of his youngest sons.”

We obviously can’t understand why God has allowed this terrible thing to take place, but we know that He is all powerful and that while we have reached the end of what the best of modern medicine has to offer, we are only at the very beginning of His capabilities. We also believe that He is all knowing. Just because we can’t see the purposes in everything that happens doesn’t mean they don’t exist (Romans 8:28).

Tomorrow we have our first appointment with medical oncology and it is our hope that we can gain some more clarity on what to expect moving forward. No matter how difficult the path ahead, it will be easier to prepare for it after some of the clouds have lifted and we can get a sense of where we’re going.