Thursday night at choir practice, the choir director announced the next song we were going to sing—"Cup of Blessing, Bread of Mercy." But I heard "Threat of Mercy," and the phrase stuck with me. I'll try to explain as I go through.
I'm back from the AACR (American Association of Cancer Research) conference in Chicago and wanted to make some quick observations before I forget.
Being part of the SSP (Survivor <-> Sciences program) at the AACR conference was a powerful experience. We had our own sessions, starting with Cancer 101 and then delving into complex topics like AI and Cancer, Cancer Drug Discovery, and the Evolution of Cancer. The sense of community and shared understanding was palpable, making the journey less daunting.
The concept that my mind keeps returning to is the idea of cancer evolution. Simply put, cancer evolution is the process of cancer cells changing and adapting over time. The development of mutations is a part of this evolution, and normally, the body catches these mutations through the immune system and eliminates them. But some mutations slip through. If they meet the criteria for the hallmarks of cancer (https://aacrjournals.org/cancerdiscovery/article/12/1/31/675608/Hallmarks-of-Cancer-New-DimensionsHallmarks-of ), they become malignant. When cancer is treated, it often continues to evolve, creating resistance. The analogy of farming's integrated pest management strategies is being used to develop new tactics to address this evolution.
I was much more relaxed and attended many more of the regular sessions than I did on my first trip to AACR two years ago. These ranged from the plenaries to individuals that I have met in my travels—Jill Feldman and Jamie Studts. I managed to fit in a couple of sessions on my favourite topic - microbiome. Though sprinting from one end of the vast complex that is McCormick Place often meant it was well worth it.
One aspect of the SSP is the assignment of teamwork to report on a particular question. Our group was given questions about precision oncology. The question was old hat to me as lung cancer is the poster child for these forms of treatment, with 60% of lung cancer being treatable with a targetted treatment. What was fascinating was the work process that evolved with our group. We had an initial meeting where we discussed the questions. We set up a WhatsApp group, a Google Doc, and a Google presentation template. We didn't get together again until we reviewed the final presentation. It was an amazing experience to learn what remote work has taught us about collaboration.
Somewhere along the way, I have acquired a reputation. Even so, it surprised me the first night when the esteemed leader of the program, Dr. Anna Barker, called me out as a troublemaker. Dr. Barker, a respected figure in the field of cancer research, has been a key part of my journey. I have been assured that it is her highest compliment, and I don't hesitate to ask difficult provocative questions.
Some of you are new here and aren't familiar with my overall journey. Here is a quick recap before I update you on my current situation.
I started with chemo/radiation in June of 2018. Then I tried a new-at-the-time immunotherapy - durvalumab - that worked for nine months. When we saw tumor progression, treatment moved to a second-generation TKI - afatinib.
I was on afatinib for almost five years. When we saw tumour progression, I got a short stint on osimertinib, which didn't work at all. And so I moved on to chemo - carboplatin and pemetrexed. I had three rounds and then had surgery for an abscess that gave me a six-week holiday. ( It was one of the side effects of "immunocompromised" that no one talks about.) When I returned, I did another three rounds and moved to maintenance. I was happily looking forward to another two or three years on pemetrexed. But a combination of dehydration, valsartan ( a blood pressure med), pemetrexed, and CT contrast dye put my kidneys into a deep dive.
Even after rehydrating, avoiding CT dye, and switching valsartan, my kidneys responded slowly, so we moved on to docetaxel at Christmas.
Thursday, that came to an end with clear evidence of progression on my primary tumour and one small nodule. That puts me in line for a SABRE radiation treatment. I had the planning scan for that on Thursday as well. It will begin on May 20 or thereabouts. Don't blame the healthcare system for the delay. I have a trip planned to Lisbon to present a workshop on AI and healthcare next week, so they gave me some travel time. It will be wonderful to experience Portuguese food without the docetaxel mouthfeel.
Mentally, I'm in a good place with a plan for the future that includes the potential for a drug called amivantamab. I'm still looking into the possibility of a first-in-human trial for a lung cancer vaccine.
You are probably wondering where the "threat of mercy" fits in. The phrase captures the unsettling paradox of finding unexpected beauty, compassion, or spiritual awakening amidst my situation. As my prognosis brings fear, pain, and uncertainty, it also opens a door to vulnerability, connection, and clarity that wasn't possible before. Mercy—whether in deeper relationships, renewed purpose, or acceptance—feels threatening because it disrupts the expected narrative of despair and demands a reorientation of identity and values. In facing mortality, I'm ambushed by moments of transcendence that are as disarming as they are healing.
I want to express my heartfelt gratitude for the unwavering support this community has given me over the years. Your encouragement and understanding have been a source of strength and comfort, and I am deeply appreciative of each and every one of you.