January and February were not quiet months.
Grant review for Health Care Unburdened took over January. As the only patient on the review board, I was in a unique position to raise questions and concerns about grants. The CMA (Canadian Medical Association) will announce the winners in April and I will have more to say then.
February turned into a scramble to catch up on all the things that had slid into the background. Applying for more conferences, catching up on webinars and reading, and most importantly reconnecting with the others in my life filled my days.
At the end of February, I escaped the cold rainy weather of the BC lower mainland for the sunny climes of southern California. I attended, at the invitation of the IASLC (International Association for the Study of Lung Cancer) Scholars program, the 2024 Targeted Therapies in Lung Cancer conference. This conference has not had a lot of patient participation in the past. In many ways this was another first for patient engagement.
The opening keynote session traced the history of lung cancer treatment gains in the last twenty years. The only tool they had were highly toxic chemo therapy. The session finished on the exciting new frontiers coming from understanding protein structures. Seeing the beautiful handiwork of Alphafold (a program that illustrates protein structure) displaying the subtle shifts in the various mutations of EGFR-positive cancer made it easy to see why some drugs work and others don't. (https://alphafold.ebi.ac.uk/entry/P00533)
The sessions went from high point to high point - too many to recount in detail. So let me give some quick highlights:
- Many researchers are working on the "What next?" after progression on first line TKI's (Tyrosine Kinase Inhibitors).
- Adding "enhancers" to conventional treatments is promising for making existing treatments more effective. ADC's (Antibody Drug Conjugates) aren't as promising as they first appeared to be, with many toxic side effects. As well we are seeing cancer vaccines entering Phase 1 clinical trials.
- Researchers are on the edge of major breakthroughs in SCLC (small cell lung cancer.) SCLC is much more deadly than other forms of lung cancer. It is exciting to see breakthroughs happening in this field.
The debates at these conferences are always a source of amusement.
- Pros and cons of chemo addition to a TKI is a big one. It may not be right for all patients.
- The role of biomarkers in SCLC was another. It surprised me that researchers are only now beginning to look at this.
- Should oncologists use Consolidation Radio Therapy in Stage 4 patients?
Some people think that science is a settled matter. The debates are a reminder that science is in a continuous state of growth.
Other things happened on the trip. I had my "shadow" following me - the director for the feature documentary being shot for the Canadian Cancer Society. Our collaboration has been incredible. He involves me in his creative process while telling my story with sensitivity, but more in a future post.
On Sunday morning after the conference ended, I went to the beach for a morning run. Running with other runners (I'm usually by myself as I run,) I had not expected the moment to be so powerful. As I was running I was thinking "Wow, Here I am a lung cancer patient with compromised lungs running on this world famous sandy beach." All this combined into an overwhelming emotion of extended grace.
After checking out of my room and dropping my bags with the front desk, I took my first Uber ride. As usual I was carrying the White Ribbon and the driver asked about it. It turns out his oncologists had just diagnosed his mother with lung cancer and we had a lively conversation.
I was off to the Getty Center Museum. Built with the Getty family fortune to house the art collection amassed by J. Paul Getty over a lifetime. The Getty Center sits on a hilltop in the Santa Monica Mountains. It offers visitors panoramic views of Los Angeles, from the Pacific Ocean to the San Gabriel Mountains and across the vast street-grid of the city.
I wandered for an hour after my arrival then decided to take the architectural tour. I then followed it with the garden tour. Richard Meier, renowned architect, marked his style with white buildings. The BelAir neighbours heard that he would be building a large white building atop the mountain. Its gleaming reflections would dominate the skyline. So they passed an ordinance against white buildings.
They reached a compromise. They built the Getty with travertine, an off-white fossilized limestone that glows in the sunshine. It fits into the environment in very natural ways. I realized that a slight shift in perspective allowed Meier to realize his vision despite the neighbour's opposition.
When I went on the garden tour, there was another inspiring story told of the garden designer. Robert Irwin was a prominent sculptor who was an unlikely candidate for garden design. He knew nothing about plants. But he created his vision was using old garden magazines and photos. As he looked through the magazines, he tore out images that he loved. A good friend told Irwin that the vast majority of the plants that he had chosen wouldn't grow in Southern California. When Irwin explained that his interest was the colour and texture of the plants, he and his friend worked out the 300 plants that would meet those goals.
The central feature of the garden was a "tuned" stream. Irwin spent three months placing stones in the stream with a crane. He would place a stone, then run water, listening and looking carefully. A crane placed each stone to produce exactly the right sound. A mysterious pair of waterfalls and a pond with a floating azelea maze complete the water part of the installation.
The garden designer and the architect (who thought he should have done the garden as well) working together resulted in a creative tension that created true harmony between the magnificence of the soft vegetation of the garden and the immovable solid geometric nature of the building. Take a few minutes to browse https://www.getty.edu/
My next post will talk more about revisiting my cancer experience through the eyes of the feature director, someone new to my story who has immersed himself in my blog and digital stories. Like the perspective shift that happened at the Getty, I'm finding myself looking at my journey differently.