Hello friends and family
I hope each of you is well and enjoying the best of Spring. If you’ll recall, I wrote previously that I would be travelling to Houston for tests and appointments with physicians at MD Anderson. Well, that trip was last week, with a PET scan and MRI on Thursday, followed by consultations with my clinical oncologist, oncological surgeon, and doctor of experimental therapy. I left with the typical feeling of anger, disappointment, and encouragement, which mix together like a homemade salad dressing. I remember kicking my backpack and hitting a wall while thanking God for the blessing of not hearing the dreaded words of “Sorry Mr. Weatherly, there is nothing more we can do for you.”
But let me emphasize something–one need only walk the mile of corridors around the expansive facilities at MDACC to recognize your blessings, and we are truly thankful that I am mobile, functional (subjectively), and have a great quality of life despite the long-term effects of this disease. God bless those folks wrapped in blankets, with gray faces and vacant expressions, slumped in their chairs and guarded by one or more loving but helpless caretakers (or perhaps none). Kim and I sit in waiting rooms and work on our laptops. If it weren’t for the white, barcoded hospital bracelet around my wrist, we probably wouldn’t look like a patient team.
A while back, a friend of mine used a term I hadn’t heard before: scanxiety. I think it is self-defining, but it refers to the anxiety one feels as you wait for the results of some sort of imaging of your body which may or may not show signs of cancer growth or spread. For me, I hadn’t had a PET scan in a few years, so I was quite nervous about the one scheduled for me at 2 pm last Thursday. If you aren’t familiar with a PET scan, just picture foreign objects ranging in size from dots to large blobs glowing orange or red in an image of the area of the body. Personally, I was afraid of the dots, since three years ago a surgeon saw, with his own eyes, cancer seeding on my pelvic wall. In addition, I have a history of cancer growth in my lymphatic system from my belly to my collar bone. None of this has been seen on standard CT scans in the past couple of years, but I was still afraid there were small nodes present that weren’t discernible on CT but would light up on PET. And it was this fear that drove my prayers and prayer requests.
Well, the good news (great news) is that there is no evidence of disease outside of my pelvic region. However, there was one node that lit up on my lower peritoneal cavity (the pelvic wall). To my clinical oncologist, this node probably wouldn’t be a disqualifier for surgery to remove all of the disease in my pelvis (the exenteration I wrote of previously). So, Kim and I moved on to see the surgeon with hope, at least for me, of a surgical option to rid me of this metabolic monster that has now made it difficult for me to sit on my butt, which stinks because sitting typically entails the butt, right?
But, I was undone by the MRI, which was a shock to me. I knew about the tumor, I knew it had grown, but it was the flat, gray-scale cross-section of my pelvis where the cancer lives that told a bitter story. The tumor, the monster, my ambivalent enemy sits between my sciatic nerves like a malformed football between two goalposts and against the bottom of my spine–more precisely the upper sacrum. This fact, along with the glowing nodule in the peritoneum, prompted our highly qualified and highly experienced surgeon to conclude that surgery is not a viable option, the reason being that it would be impossible for him to remove all of the disease in the area and the recovery for the disease is horrid and thus not worth the risk. The most difficult part of my conversation with the surgeon is that it became clear that the man is most likely an atheist, which doesn’t affect my opinion or feelings for the man, but it means that he lacks the imagination for the miraculous to which I cling, having survived metastatic colorectal cancer for over 6 years. I wonder if God just might cure me, and I imagine that removal of the big tumor is the first step for that, followed by new treatment options to kill the small stuff. But not this man. His unspoken advice to me was clearly for me to live as long as I can and as best I can before the tumor puts me in a wheelchair or the spread of disease into vital organs takes me down.
I just can’t live like this.
I titled this post “Escape Room” because this is the image that came to mind with how I seem to approach life as a Christian, and I can assure you that this is by no means the correct way to walk by faith. If the cancer life is the room in which I’m trapped, I’m constantly and determinedly looking for and reading signs that I believe are leading me out. I look for signs that point to the future because I believe wholeheartedly that there are innumerable signs that I need only remember that show me how God has been leading me down a good path, however unpredictable the path I have walked would have been looking forward. So, in this escape room, I know that God is with me and will help me get out, no matter how difficult the situation–I look for clues in my circumstances and pray to God through Jesus for outcomes that I have concluded are the way out of this cancer-trap.
But then the outcomes are not what I expect, and I picture myself collapsing in a heap in the Escape Room, wanting to give up because I can’t solve the riddle of predicting God’s path for me with what actually occurs.
Good heavens what a fool. And I know it. There is no peace trying to discern the will of God. But there is sufficient peace in remembering his loving hand, which doesn’t so much give us direction as it does secure our steps. The Escape Room is an invention of my imagination because I want control. I only want to pray for what I’m sure will come to pass.
After our visit with the proud surgeon, we met with a doctor in the Targeted Therapy department. He had received an email from my clinical oncologist suggesting that he look for immunotherapy options because I had clearly had an effective response against my disease from the previous immunotherapy treatment I received at Sarah Cannon in Nashville from late 2016 to early 2018. Whereas the surgeon seemed to disregard any special (and surprising) characteristics about my survival story that might make surgery seem more reasonable, the oncologist recognized that “there is something unique about your biology” that makes immunotherapy a viable option for your disease, despite the fact that this approach has remained ineffective to the overall population of colorectal patients.
Interestingly (Providentially), the new node that appears to be growing on my pelvic wall opened up new treatment options. By being accessible by syringe needle, a clinician can inject me with agents that make the node that is otherwise unseen by my immune system appear as an antigen that should be eliminated by immune response. And once this occurs, the hope is that the T cells that recognize the tumor in my peritoneum will suddenly recognize the monster in my gut and begin to kill its cells too. There are some hoops to go through, as usual for experimental trials, but we hope to begin this therapy within 30 days. So, instead of frequent drives to Nashville, it appears we will be frequent flyers to Houston.
In a classic SNL skit titled “More Cowbell” (link below), Christopher Walken, playing the renowned producer Bruce Dickinson, encourages Will Farrell, as the cowbell clanging Gene Frenkle of Blue Oyster Cult, to “explore the space” as he attempts to satisfy Dickinson’s desire for “more cowbell” in the song “Don’t Fear the Reaper.” As I stare from my deck into my backyard, with a lawn leading into a wood, with trees rustling lightly in the wind, I recognize that this is the place I want to be, spiritually, in open space, not trapped in a room trying to find my way out, so to speak. Resting in the fact that God is in control and that He is trustworthy grants peace and freedom. Trying to predict the will of the Creator of the universe is obviously pointless and maddening, so why do I keep putting myself, and God for that matter, in a box? This is a struggle, but I’m so thankful that I’m loved and accepted anyway.
So, I’m just gonna go with it, as they say. I thought I was headed for a summer surgery, but instead it is more experimental chemicals. The guinea pig scratches and claws on. Thank the Lord. And these feelings of being trapped by cancer with anger, disappointment, and yet encouragement? I must escape and explore the space, the freedom in Christ. And with all this heaviness and deep introspection, I clearly need more cowbell. Right now I’m settling for wind chimes.
** The pic of our family was taken on Mother’s Day.