I’m a week out, now, from my last trip to Nashville for a CT scan, meeting with oncologist, and treatment. I hope anyone wondering has assumed “no news is good news,” and you’d be right. For those who are mostly interested in my physical health, there are no signs of disease in vital organs and thus my life doesn’t appear imminently threatened. But, as always, this is only part of the story.
The CT scan showed no sign of obvious disease progression, though there are areas of inflammation in both the lower colon, the known site of the tumor that has refused to die after many years of treatment, and also in the small bowel, which is suspicious for new disease. Because it is unknown whether the inflammation is due to tumor growth or other reasons, the decision was made to stay on the current immunotherapy regimen. But I confess that I’m losing confidence in its efficacy, and I think I began to frustrate my oncologist with my questions and quiet dissatisfaction with my options.
The biggest complication is the presence or absence of a fistula between my rectum and my bladder. A few weeks ago, my urologist concluded that I have a fistula, though he wasn’t able to see it clearly during his examination. Last week, the radiologist analyzing my CT scan did not note a fistula on his report, but he did write that the colon and bladder were “communicating” (interesting choice of words). The problem, I learned when talking with my oncologist, is that I would be automatically disqualified from any other clinical trials if I have a fistula. This means that I either stay on the current treatment regimen or move to one of the standard, FDA-approved therapies for which I’ve yet to be prescribed but aren’t backed by strong statistical evidence of efficacy.
Fistula? What fistula?
To live without promising medical alternatives is to walk a highwire without a safety net. What do I trust for safety? Jesus asks me to walk out on the wire, confident to complete the journey, trusting that my life is secure in his grip. With my thoughts ranging from doubt to certainty, my arms are outstretched to receive the loving support of friends, family, and church and to balance my every step. Do these things suffice without a safety net of promises from my physician for a good and long life? I felt my face turn cold upon hearing that the issues in my bowels may preclude me from participation in subsequent trials should my disease progress. Doctor, nurse practitioner and wife knowingly stared at me; the safety net had collapsed. And it could be that that is right where God wants me to be, teaching this foolish, double-minded man to live by faith.
It took me a week to process my visit. I didn’t want to talk to anyone because I didn’t know how I wanted to report what I didn’t understand. I can’t lie and say I was heartened by what I was told by most of the clinical folks at Tennessee Oncology, and that is not their fault; they treat me with great care, but there is a boundary to medical knowledge and thus there are limits to what they can say. One of them, though, Nurse Kelly, has recently crossed the line to be a friend as well, and she sent me a message the night before my appointments to encourage me.
Kelly is also the one who encouraged me several months ago after I had received some disconcerting news from a CT scan, threats that came to nothing. I wrote in a blog post how she had shaken me from my inward state of distress with “God’s not through with you yet,” a wondrous yet mysterious statement that became the penultimate line of my subsequent book, Two Stories (see my About page).
I keep a copy of the book in my computer bag in case I meet someone to whom I feel called to give it. After the appointment with the oncologist, I lay in the infusion chair in another silent state of inward distress. Sitting next to me, though, was a woman, Kathleen, receiving an infusion of iron. She was inescapably chatty, capturing people in a net of extraversion. She first struck up a conversation with my wife. I tried to remain taciturn, attention on my laptop and my work, trying not to think about my disease. My participation in the conversation was very limited. And then she said something. It may be a common phrase of Christians with which I’ve been unfamiliar, but I have only heard it in the chemo-room at Tennessee Oncology, now twice: “God’s not through with you yet.”
I turned to look at her: “Did you just say that?”
Again, I don’t know what to think about this statement. Its meaning, if there is one, is beyond me. But it was at this point that I closed my laptop and joined the conversation. I recall her asking me a question about my faith, though I don’t remember the exact words. Having been reminded in that very moment, I remember answering, “God has been so good and merciful to me.” Feeling the call for which I had waited, I pulled the copy of my book from my computer bag and gave it to her, and I asked her to read the final paragraph. Tears filled her eyes. We had shared a moment.
Before she left, our small group of four held hands, Kathleen, her husband, Kim, and I, and she prayed for us. Time and again, the eternal power of love is manifest in the web of God’s people, helping to wash the stains of death from my soul.
I’d appreciate your prayers about my fistula (or not) and other issues that are becoming increasingly unpleasant. I think I’m either getting better or I’m getting worse. We pray the former.