Here we are three weeks after a successful craniotomy. It’s still a bit surreal to think that I had brain surgery. A lot has happened in the world around us including the death of Pope Francis and the beginning of the conclave to elect the 267th successor of St. Peter. Yet, it seems as if the world has been moving in slow motion as I’ve been sitting on the sidelines.
Update on the Brain
We were very happy to follow-up with my neurosurgeon last week. The official report came back that no cancer was detected in the brain mass that was removed. Pathology shows that it was indeed a cavernous malformation of blood vessels. He said the surgery went incredibly smooth and quicker than anticipated. My recovery is progressing nicely. Both the doctor and Beth reminded me that I am recovering quickly even if I don’t feel like I’m making much progress. We will begin weening me off the anti-seizure medication over the next month and then will follow up with another brain MRI in August. The hope is that I will be discharged from his care following the post MRI visit and put this chapter of my health saga behind us.
Side note: I got to see a picture of my brain taken during the surgery. I geeked out. It was pretty cool. I would share it if I could, but that is not possible at this point.
Update on My Overall Neuroendocrine Cancer
You may recall that I visited my oncologist a few weeks before the surgery and learned that the metastasis in my liver was stable on my most recent liver MRCP (enhanced MRI) scan from February. There have been some lab results over the past few months that aren’t concerning, but are high enough that we are keeping an eye on them in future tests.There have also been some symptoms that, combined with the lab tests, give us reason to be suspicious that something is brewing. My oncologist ordered a new PET scan for diagnostic purposes in light of this. It also would, hopefully, provide some peace of mind. I went in for the PET scan a week before surgery. Yesterday, we followed up with my oncologist to review the PET scan and discuss what lies ahead.
Let’s start with the good news. This was the highest resolution PET scan I’ve received (the machine was only the third in the country when it was installed at Siteman last October). It showed no evidence of progression and my cancer is described as “stable disease.” I’m still on track for another MRCP in September before having hepatibiliary (liver) surgery to remove as much metastasis from my liver as possible. It’s good news and we are grateful for it.
You would think that I would be ecstatic given last week’s report from the neurosurgeon and yesterday’s report from my oncologist. I’m learning through experience what I have read from many cancer patient stories. I’m spending a lot of time “in between.” Yes there was good (actually great) news. There is often the lingering question of “but what’s next?” It’s a question to which the doctor’s can provide some answers, but at a certain point they are like meteorologists. “All conditions point to ‘x’ but conditions could change at any point.”
We had a frank discussion about the potential avenues we will encounter as we move forward. One thing is clear: every scan that comes back with no evidence of progression is a gift and should be celebrated. Each passing month decreases the odds of that happening and increases the chance that we will see evidence of progression. It’s important to remember that neuroendocrine tumors are very slow growing (a good thing). They are also difficult to cure (not so much of a good thing). Treatment is aimed at surgical resection/removal of disease and stopping the growth/spread of disease.
My oncologist brought up the subject of treatments yesterday and the potential to resume the first line of defense, the one that brought “intolerable” side effects the last time we tried them. Yesterday was the first time we noticably talked in terms of “ten years.” We began focusing on what we need to be ready to do now so that I’m not in a place where there is a poor outlook with limited options ten years from now. It was a sobering experience. We talked about his perspective on the potential liver surgery, how invasive it would be, the associated risks, the difficult/long recovery period, and the potential benefits.
Thoughts on What Lies Ahead
I wish I could tell you that I walked out of yesterday’s appointment filled with confidence and ready to charge into pre-op for the liver surgery. The reality is that my cross is particularly heavy right now. I’m dreadfully scared of the pain and recovery associated with the liver surgery. I have an acute sense that, in terms of difficulty, the brain surgery I just experienced is likely the easiest surgery from a patient perspective (the colon surgery being second and liver being the most difficult). I keep coming back to a phrase that I uttered this when we received the stage iv cancer diagnosis a year ago, “I’m not ready, but let’s go!” It’s safe to say that we’ve gone some of the way and I’m better prepared to keep going. I am also more and more reluctant to keep going.
Thank God it is not solely up to me to keep going. Our wonderful support structure of family, friends, parish, and local community have been a great support for us each step of the way. It’s clearly evident to see Christ at work through the Church helping our family carry the cross of my health. Through you I find the strength to face the challenges and charge ahead.
I keep thinking of the cinematography at the end of “Lord of the Rings: Return of the King” where Aragorn has assembled the troops to face the armies of Mordor head on, against overwhelming odds and little chance of success, ready to fight “for Frodo.” I think of our five children when I think of this imagery. I’m not just fighting for my survival in this life. I’m fighting to be here for and with my children for as long as i can. I firmly trust that God will take care of Beth and the kids if I meet my end on this earth, but I also recognize that there is a design in the vocation of marriage that I am a primary vessel for God to work in their lives as husband and father. I look at our children and hear the words of Aragorn when he says, “there may come a day when the courage of men fails, but it is not this day!”
Where is God In All of This?
This is a question I have been asking for quite some time. There was a tangible sense that He was right there with me as I was in my hospital bed in the ICU following my brain surgery. Lately, I feel like He has been asking me one question: “Do you trust that I am making you holier through this?”
I had the fortune to feel well enough on Good Friday that I was able to attend the Service of the Lord’s Passion at our parish. My energy was quickly fading as quickly as my pain was intensifying when we arrived at the moment to venerate the cross. I can’t remember which particular reflection I had been reading in the prior weeks, but the moment in the service was a visible reminder of the witness of the Church and countless saints. No matter what lies ahead in my journey, God has gone as far as death so that I could follow Him with the assurance that there is something more beyond the final moments of this earthly pilgrimage. I couldn’t stop thinking that He was saying to me, “I’ve gone here [to the Cross] so that you wouldn’t have to go to your cross alone. I am with you. Do not be afraid.” As I began to stand up, I had to lean heavily on my cane and on Beth to be able to make it to the cross setup for veneration. Several people told me before and after the service that I certainly had a reasonable excuse to stay home, or at least stay in my pew, but how could I do that when He had gone to the Cross for me?
I’m still failing to articulate how, but I can wholeheartedly say that this was the most impactful Good Friday I’ve ever experienced in my life. Sadly, I did not make it back to Church until our youngest daughter’s First Communion Mass about a week later.
I’ve heard the voice of Jesus say to me, in everything from a serious tone to a lighthearted chuckle, “Adam, your Easter celebration is coming, but let’s stick with the Passion and Good Friday for a little longer.”
Isn’t that what this life is all about? We are made for the glory of the resurrection, but we aren’t there yet. We linger in a tension during this life where we have a foretaste of Heaven, all while still experience the pains inflicted in the wounds of sin. It’s as if we are perpetually in Good Friday, but with the assurance that Easter is coming! In short, we have HOPE!
Final Thoughts
The world has certainly slowed down for me during this time of recovery. Like many, I was somewhat surprised and saddened to wake up to the news that Pope Francis had died on Easter Monday. Much has been written about his impact on the Church and I don’t really have anything to add to what’s been said. I continue to pray for the repose of his soul and to pray for the Church.
I was listening to some commentary today as the cardinal electors processed into the Sistine Chapel to begin the Conclave. One of the panelists was speaking about the hope that each pope would show Jesus to our broken world. That’s where my prayer is today. I could not walk the journey I am on without Jesus by my side. I am grateful for the parish priests, youth ministers, friends, and colleagues who have helped me see Jesus working through His Church and in my life.
I was privleged to spend some time in prayer with Pope St. John Paul II (and ~14k youth) when he came to St. Louis in 1999. I will never forget his words and can still hear his voice saying, “Remember Christ is calling you, the Church needs you, and the Pope believes in you and expects great things of you!”
For most of my life I thought I would be living those words out through parish ministry or the radio program, but here I am living them out through a journey with Neuroendocrine Cancer. It is my prayer that you see Him working through my story and find Him working in your life. Jesus is with us. We are not alone. Let us never forget that. Let us pray for all who do not know it. Let us forever strive to conform our lives to the Cross in the hope of the new life of the resurrection.
Happy Easter.
-Adam