Six weeks can make all the difference in one's outlook on life. A few weeks ago, I was seriously considering palliative care and what it would look like. Now, I have transitioned to planning trips throughout the spring and into the fall. There is hope.
I have had two more infusions of docetaxel and find it very tolerable. I have a couple of rough days after the effects of the dexamethasone wear off. The oily mouth feeling lasts about a week. I still battle fatigue, and two naps daily are becoming the norm instead of just one.
My spring travels began with a trip to Huntington Beach to the Targeted Therapies Lung Cancer conference. The IASLC STARS program sponsored my participation. When I signed up in November, I had to assure them that I would be attending. I wondered if dying might excuse me. For the first time I purchased travel medical insurance. I didn’t need it. As I discussed the insurance with others, I realized that it is riddled with loopholes that would have negated it if I had needed it.
This conference is much more relaxed than the World Conference on Lung Cancer. There is only one track of sessions, and though the sessions are long (two hours each), there is a 30-minute break for networking. This was the most interesting part. I spend much time with other advocates on Zoom and swap texts. The real benefit is sitting face-to-face and having long, heart-to-heart conversations. It is also a chance to meet with Canadian oncologists to learn what is going on from their perspective.
As one might expect with me, there were several moments of humour. When a presenter put up a slide with the pre-polling question, “Who Loves Docetaxel?” Into the silence when no one else responded, I had to raise both hands and yell, “I do. It’s keeping me alive!” I did have a few conversations about that afterward. The presenter’s point was that it is still the comparator arm for many treatments. And it is not loved in general due to its numerous side effects.
At another humorous moment, I met an oncologist familiar with my case. He asked me to pull down my mask to see my beard. He expressed his surprise that I still had so much hair in my beard despite three cycles of docetaxel. It is thinning slowly though. We had a good discussion about alternatives to follow up on this treatment. He wondered about additional radiation and an osimertinib rechallenge. Both of those have turned out to be real possibilities.
After my return, my oncologist discussed these possibilities with me. He mentioned that he had spoken to my initial radiation oncologist, who felt that further radiation would be safe and effective. The retry on osimertinib is a challenge given that it is unusual. I have learned of several patients doing it through compassionate access; it is another possibility.
We also discussed the results of my latest CT scan. This remarkable man called me as I drove from the airport to the hotel in Huntington Beach. This was five days after the scan. The results were mixed. The new tumours were shrinking, but the old one had grown by a centimeter. There could be several reasons for this. This scan had no contrast dye to protect my kidney recovery. This makes it harder to measure accurately. The baseline scan was also from late October, meaning that the tumour had two months to grow before treatment began in late December. It could also be shrinking, but has that growth to reduce first.
I mentioned previously a “Hail Mary” possibility. I have learned more about that. I forwarded my records to an oncologist at Princess Margaret Hospital for further evaluation. It would be a trial of one for an emerging cancer vaccine based on mRNA technology. Much of the work is proprietary, so little information is available. At the conference, I learned that other trials are being conducted in the United States. The approach here is a little different. Similar vaccines have resulted in remissions of up to three years in pancreatic cancer and melanoma trials. I’m struggling to balance hope and reality. There are many hurdles still to cross.
My upcoming travels are hectic. I’m headed to Ottawa for the CMA Health Summit at the end of March. I’ll be making a short presentation on the impact of technology in medicine. I will speak specifically to biomarkers in lung cancer and the treatments that are emerging in response to them. Then, I travel on to Halifax for a keynote presentation on Advocacy to the International Congress on Academic Medicine. This will be an interview with Globe and Mail columnist Andre Picard.
I’m returning to the AACR Survivor -> Scientist program for my second year at the end of April. My poster on the pan-Canadian Action Plan for Lung Cancer was more compelling than my rejected abstract last year. Then in the middle of May it is off to Lisbon, Portugal as part of a group presenting a workshop on Patient Engagement for ICIS.
In the midst of all this, I am working on my memoir. It is slowly coming together, though more slowly than I thought. It is hard to revisit the emotion of the journey. Telling humorous stories is easy, but diving into the liminal waiting times is much more complicated. And it has meant revisiting some challenging times.
Through it all, though, I feel the presence of a power greater than myself. It comforts me that my steps are guided and that though I may face peril, I’m not alone, and I am loved.