Life inverted living with cancer
Dr. Jones resected around 95% of the tumor through the operation. While this was not everything, it felt like a real victory.
Later on, I would learn more about the complexities of my surgery and how masterful a job Dr. Jones was able to do. So many things could have gone wrong during my procedure. Even the slightest misstep could have resulted in irreversible damage to my brain affecting speech, vision, balance and cognition. I’m grateful to walk away seemingly unscathed. When Dr. Jones came by to check in on me, what genuinely poured out of me was "you're my hero."
Following surgery, I was put on heavy medication for pain, nausea, and seizure activity.
After a few days of recovering at MGH it was clear that I needed rehab. It was really hard to walk in the days following surgery. I hardly moved from the bed. My routine was to get up every so often to sit in a chair 3 feet beside me.
This was a lonely time. I can’t fully express how painful it was to be alone, without the prospect of a visitor. Not even my wife or pastor could visit. I’m grateful for the grace of FaceTime and Zoom, but they fell far short from the comfort I needed at a time like this. You can’t embrace a screen with a hug and my young boys did not understand why they couldn’t be with their dad. I’m afraid of the ripple effect from treating everyone like they have a disease, even under the circumstances of a pandemic.
During my recovery at MGH, a woman from our church dropped in to visit me. She happened to work at the hospital and heard I was admitted. I was thankful for the company and a familiar face. She brought Valentine’s Day cards so I could write something to the boys and Kate. She even offered to deliver them to our house! What an incredible gift this was to me.
After 10 days between the two hospitals, I was ready to leave this all behind. Kate picked me up at Spaulding Rehab in Charlestown and we drove to my appointment at MGH with Dr. Miller, the oncologist who would let us know the results from pathology. Up until a few days before my appointment, I wasn't even sure what an oncologist’s role was in the process. Eric, who is a pathologist himself, informed me of the weight of what I was about to step into.
Dr. Miller informed me as gently as she could that the news was not what we were hoping for. I was diagnosed with a grade 4 astrocytoma and urged not to do my own research because gliomas were being reclassified by the World Health Organization. It would be hard to find accurate information searching around the internet. I can’t imagine being in an oncologist’s position. Having to inform someone that they have a terminal illness is a pastoral job. No one should have to bear the responsibility to deliver such shocking, life-altering news. The world is not as it should be.
We were sent home reeling from the diagnosis and the road that lies before us. I sat at home holding our one month old son, Matthew, waiting for Caleb and Nathan to arrive home from school. It was a moment of joy and grief to be with my family, at last! I think our young boys were most excited to finally celebrate Dad’s birthday by eating cake (they patiently waited)! My mom, dad and sister came to visit the next day and the army of people praying had stockpiled us with food for months. Kate's good friend flew in for a week and was a tremendous blessing, helping with the boys and optimizing our small apartment.
A pastor friend of ours offered to come to the house for a short visit and to pray with us. We were excited to have a friend who has meant so much to us come over. He listened, shared in our grief, and prayed over us and our kids. We sat across our sectional while he visited, but as he was about to leave, he came over saying “COVID be damned” and gave me my first non-familial hug in months. I will never forget that moment and did not know how much I needed it.
I've felt a lot like that guy from the movie "It's a Wonderful Life," where suddenly, an outpouring of support floods in when he needs it most. Likewise, so many have come alongside me in this journey through cancer. I am grateful to, and humbled by, those willing to walk through this mud with me. At times it felt more like an army crawl.
My wife Kate, my family, and Pastor Bryan have been a constant, daily encouragement. It has been a great blessing to me how, in this season, the Lord has brought new friends into my life and also, reconnected me many from the past.
To have a wife who is not running, a pastor ready and willing to struggle alongside through the hardest questions, and the unyielding support of family and friends has brought me to my knees in thankfulness. “I thank my God in all my remembrance of you” (Philippians 1:3).
Despite this diagnosis, God’s grace has marked so much of my story. If my optometrist hadn’t urged me to go to MEEI, who knows how my story unfolds. Being in the middle of a pandemic, it would have been easy to push off some mild symptoms.
I’ve been at some of my lowest moments this year. Depression set in almost immediately, I lost a significant amount of vision from the tumor and haven’t been willing or able to drive since before the events of February 2021.
In many ways our life has been inverted: I’m at home full-time, leaving my job at Northeastern and going on long-term disability. Kate took on a full-time role as the Athletics Director at Boston Trinity Academy, the school she’s been working at for years. Adjusting to the new order of our lives has been hard, but also brought a lot of unexpected joys. I've taken on new domestic responsibilities, planning and cooking most of the meals. Kate, in addition to her role as AD, coached the girl's varsity lacrosse team in the spring. The Lord’s provision allowed us to buy our first home in an ideal neighborhood of Boston, Hyde Park. It’s where BTA is located, our church meets, and public transportation is easily accessible. After years of making offers, nearly moving out of state, and much disappointment, our townhome fits us perfectly, with plenty of space, a small yard, and a 5 minute walk to one of our favorite playgrounds.
I remember talking to my Father-in-law from the hospital. I was worried about Kate, what she would do if I didn't make it. He encouraged me, “you don’t worry about that, you just focus on the fight before you.” Kate got to work quickly joining support groups and researching additional treatment options.. She had found an article published in Nature, a prestigious medical journal, about a vaccine trial for patients with my diagnosis showing very promising results. I didn’t know what I was looking at and wasn’t ready to dive in reading about what patients have done to throw the kitchen sink at this.
Sometime in the early spring of 2021 we connected with a dietitian who specializes in gliomas. She armed us with a nutrition plan and more research than we knew what to do with. She was adamant about looking into a clinic in Germany producing the type of vaccine Kate had found, a neoantigen peptide vaccine, personalized to the genetics of your tumor. “I think you’re an ideal candidate for this type of treatment.” She warned us that it was expensive, not covered by insurance, and would require a year of travel once per month for the administration of the vaccine in Tubingen, Germany.
By March of 2022 we had all the confirmations we needed to feel confident that this personalized vaccine, though experimental, was a “no-brainer” for me. Over the course of 4 days, we surpassed our goal of $125,000 which would cover the production of my vaccine, travel and lodging for the year. It was simply amazing to witness. So many onlookers shared in our joy as 600+ people helped us to surpass our ambitious goal.
Although I never wanted to be the face of a Gofundme campaign, God taught me a lesson in generosity. He truly “owns the cattle on a thousand hills” (Psalm 50:10).
I’ve needed all the help I can get to worship God in this season. I’ve been learning to love the Psalms, especially chapters 23, 34, 62, 84, 90, 145 and 147. I've found help and encouragement through Dane Ortlund's devotional book on the Psalms, In The Lord I Take Refuge. They have given me a language to speak when often, I'm unable to mutter a word on my own.
A familiar prayer has also resonated deeply. It's called The Valley of Vision.
Lord, High and Holy, Meek and Lowly,Thou hast brought me to the valley of vision, where I live in the depths but see thee in the heights; hemmed in by mountains of sin I behold thy glory.Let me learn by paradox that the way down is the way up, that to be low is to be high, that the broken heart is the healed heart, that the contrite spirit is the rejoicing spirit, that the repenting soul is the victorious soul, that to have nothing is to possess all, that to bear the cross is to wear the crown, that to give is to receive, that the valley is the place of vision.Lord, in the daytime stars can be seen from deepest wells, and the deeper the wells the brighter thy stars shine;Let me find thy light in my darkness, thy life in my death, thy joy in my sorrow, thy grace in my sin, thy riches in my poverty, thy glory in my valley.
- The Valley of Vision