Tensions of Uncertainty

Posted on: Mon, 04/29/2024 - 12:14 By: journeyadmin
Watercolour image of buildings in downtown Vancouver



Planning seemed pretty straight forward but as the weeks passed with no chemo appointment, I started struggling. The low point came on a Friday afternoon when I went for my normal run and after 4K had to stop. I was coughing badly and couldn't stop. I finished the last kilometer hobbling and doubled over. I found myself short of breath on several occasions and it scared me. Is this how I'm going to die? Waiting for a charge nurse and a booking clerk to find a slot in schedule for me?

I calmed down and did my run on Monday much more slowly but was able to complete it and my spirits started to lift. I had a doctor offer to give me some ideas on how to navigate the system. I took him up on the opportunity to have a conversation. I was expecting some wise advice on how to present to the ER. Instead he suggested that I gently ask if calling my provincial politician would help hurry things. I chuckled and said "Never make a threat you aren't prepared to carry out." And yes my MLA taught me entrepreneurship when I first came to BC twenty years ago. I have talked to him on several other issues so no hesitation.

I called my oncologist to give him a heads-up to the route I was going and then called the booking line and left a message for the clerk. I wondered out loud if calling politicians might help. And I mentioned that I really didn't want to show up for the Canadian Cancer Society Daffodil Ball looped on dexamethasone and Benadryl.

I got a call the next morning organizing me for the next Tuesday. I organized my ride and that bit of tension and drama resolved itself. The treatment went well. Perhaps too well. I felt so good that I went and booked my Covid booster shot. Between dexamethasone withdrawal and the sore arm / flu-like Covid symptoms I spent a miserable weekend.  By Monday I felt quite a bit better and got back to my regular busy schedule.

The Future

There is still a lot of uncertainty though. As I settled in to think about what is happening, I received an offer from a lung cancer targeted therapy specialist. He offered a second opinion. I thought about it for a day and contacted my oncologist to see how he felt about it. I couldn't get the nurse to refer my question but she didn't think the doctor would have a problem with it. I wonder though if I'm setting myself up for disappointment.

The standard of care in BC is not to biopsy on progression. What happened in November was unusual. The biopsy was premised on a specific result that would change the course of treatment. There was some additional testing done at that time but it showed noting of interest. For those interested - no ALK, ROS1 though PDL1 has increased slighty.  I'm gathering my notes and images for submission for the second opinion.

I have a few things that I'm interested in. There was some research done before the standard became osimertinib. That research showed that adding chemotherapy to afatinib was effective. That is something i would like to explore. Afatinib was effective for me.  It might very well be that the progression flare is related to removing afatinib from the mix. Some Chinese researchers shows that re-challenging with afatinib can be effective.

There are several other drugs that are being used in folllow-up to osimertinib progression. One of them, amavantinib, I mentioned to my oncologist in our discussion initially. He thought enough of it to mention it in his notes - something that I found when I requested them. More uncertainty.

The ultimate uncertainty though is "will this chemotherapy work?" We won't know until we do a CT scan after three cycles. Until then all I can do is read the entrails of my body reactions which are a notoriously bad predictor of outcomes. I have had friends die within six months of starting this regime. And I have had few rack up three and four years on this treatment. Which will I be?

The Daffodil Ball

In the midst of all that I have the affirmation of making a difference. I was the featured patient/survivor at the Daffodil Ball on Saturday night. One of my friends asked if it was a success. to which I cheekily responded, "how do you define success?" If it was emotional impact. Yes, there wasn't a dry eye in the house after the documentary played. If it was changing the narrative around lung cancer when Sarah McLachlan came to the mike a few minutes later, she told of her non-smokng mother who died of lung cancer. I think we're making a change. If you measure it by money, then $4.4 million dollars raised for cancer research is good.

There were some highlights:

  • A guy plonked himself down in front of me, stuck out his hand and said "Hi. I'm Adrian. Can I get your autograph?" I'm claiming chemo-brain for not realizing it was Adrian Dix - BC Minister of Health. We did chat and I did apologize for not recognizing him.
  • Watching Fred Lee encourage "vigorous bidding" as an auctioneer was amazing. He set up rivalries and just plain old tugged on heartstrings.
  • Getting balled out by Dr Renelle Meyers because my story messed with her makeup. She did a beautiful job of telling the story of the impact of research on screening by breath.
  • The gracious tolerant company of my wonderful caregiver step mother - Sandra. I think she thought we would never get out as people kept coming up as we tried to leave. But she was the rock in a tempestuous sea of emotions.

Yvette, my late wife, had a favorite saying "Courage is the gazelle turning to face the lion." Not exactly Biblical but the heart of confronting fear is the ability to feel the strength of an all powerful God in my life. The Psalmists words in King James English have been vibrating through my thoughts. "Yea though I walk through the valley of the shadow of death, I will fear no evil, for you are with me."

In the opportunities that present themselves to make a difference, in the supportive prayers of people across the world, I feel that loving presence.

Thank you.