As I was writing this blog post, I kept thinking about the number of people who approached me after my interview with Andre Picard - health columnist from the Globe and Mail. Many affirmed the power of my vulnerability but also said that my words had moved them to tears. I didn't set out to do that intentionally. As I tweeted on social media, maybe my talks should come with trauma warnings.
Since I last sat down to write a month ago, though it seems much longer, there has been a lot of water under the bridge. I have had another three infusions of docetaxel. I expect that will be my last one. I haven't had a planned CT scan. I canceled the appointment they gave me as I would be in Ottawa. The rebooking landed me on a date when I will be in Chicago, so I'm trying to sort that out. I may end up with another infusion before it is finished. Despite these challenges, I remain resilient and hopeful.
If things were responding well, my oncologist would cancel the last treatment. I met with my oncologist on Wednesday. There are two more routes of treatment that are dependent on that missing CT scan. The first treatment possibility of radiation will have to wait until we see what is happening.
The second is much more interesting. I met virtually with the doctor leading my participation in the lung cancer vaccine trial. This trial would be a first-in-human trial to test the efficacy of a new approach to an mRNA vaccine. He made it clear that this trial has a lot of risk. They would be looking at whether it works and, more importantly, for side effects. As a vaccine, most of these side effects are related to inflammation. Lungs could be the most vulnerable, but the colon, liver, and other organs could be affected. Sobering thoughts. The other part of the equation was to ensure that no other treatment options were open to me.
To that end, he will check in with oncologists in Vancouver and my oncologist. His primary interest was to see if I could get off-label access to amivantinab. I was initially very interested in this drug when I first saw progression. Still, access is challenging, and the more I hear about the IV side effects, the less excited I get. However, we will look into it.
After my conversation, I returned to the session I had been in and sat, trying to gather my thoughts and re-engage, when my phone rang again. The oncologist had been thinking about our conversation and had another alternative that he wanted to explore. The datopotamab deruxtecan clinical trial was closing at midnight, and he wondered if I was interested. I have two fellow patients here in BC taking the drug. I'm very curious and open to exploring new possibilities.
As I sat, absorbing the conversations, tears started to flow. I realized that I had a great opportunity and an oncologist who was deeply engaged in my situation. I am deeply grateful for the support and care I receive.
These aren't the only tears to flow over the last few weeks. I had the opportunity to speak at the CMA Health Summit in Ottawa. I spoke to the need for genetic testing and biomarkers for cancer patients. Then, I raised the issue of uneven treatments and the expense. Moments before I spoke, I recalled that I was following in the footsteps of another cancer patient who had spoken at my first Health Summit - Robin McGee. I could only hope that my voice was as powerful as hers had been with me.
As I was speaking the following week in Halifax, I took the opportunity to take a little break in PEI. I rented a car and drove through Nova Scotia and New Brunswick across the Confederation Bridge to Charlottetown.
The drive was interesting. Because it was off-season, many of the places Google suggested were closed. But the interesting one was the restaurant ChatGPT suggested for lunch - Sugar Moon Cafe. The pavement got progressively narrower and more broken up. Then Google Maps sent me up a gravel road. I met no cars and wondered where it was sending me. My surprise at entering the parking lot and finding it full was pleasant. The rustic log cabin exuded charm. The hostess/owner looked around at the full seating and asked if I minded sitting with a group. I laughed and said, "No one should eat alone." She did find me a table, though. I had some of the best sourdough pancakes I have ever eaten. They were delicious and made with Red Fife flour and topped with wild blueberries (not the big commercial blobs we get in BC).
The hostess/owner and I struck up a conversation. In a few minutes, I learned she was going to Guatemala to attend the language school I had participated in in the eighties to improve her Spanish. At one point, the server appeared with a shot glass of something she called maple syrup tonic for my cough. The tonic did improve my cough for the rest of the afternoon. No, I didn't get the recipe other than it contained a touch of cayenne.
It rained for the rest of my PEI visit. So I holed up in my Bed and Breakfast for most of the first day, venturing to a rare bookstore in the late afternoon. I came away with only two books and no idea I would fit them into my already-filled suitcase. (I made the mistake of visiting the Lego store in Ottawa and adding the mini Orchids to my "to build Lego" collection.) On the second day, I picked up some picnic groceries and headed to Point Prim Lighthouse and then to Cavendish Beach. I was the only one at either place and though I had thoughts of painting, neither was conducive to that.
The International Congress on Academic Medicine was filled with charming conversations with academics and other patients. Two conversations stuck with me. One was a lengthy conversation about the challenges of evaluation. We started talking about Patient-Reported Outcomes, which are often different from the measures that clinicians and researchers use. The second one was with a bureaucrat from the Canadian Drug Agency. Her task is to reduce the approval times for new drugs. We delved into the complexities of drug approval and the potential impact on patients. These conversations, among many others, continue to shape my understanding of cancer treatment and the healthcare system.
Finally, I was home again. As I have mentioned, I'm working on a memoir of my cancer journey. I ran into my first experience of writer's block in all my writing. I didn't recognize it at the time. I have always been able to put my butt in the chair and write. But this time, it wasn't happening. Even visiting the Surrey Writer-In-Residence didn't get me going. Then, I went to the first Remote Ricer's group I had been to for a while. I complained, and when they asked what I needed - my answer was accountability.
Along with several other suggestions, I found myself writing the following day. Again, the tears flowed. With friends and supporters like this, how can life be anything but happy?
I'm grateful for all the support.