Uncomfortable Bureaucrats

Winter Road Ink and Watercolout

I've caught you up on my Christmas travels and my wild trip to Toronto. Let me bring you up to date on the latest craziness to impact my life.

The flight back to Vancouver was uneventful. My seatmate had been one of the last people to board the plane. After exchanging some perfunctory greetings and establishing territory as passengers in economy do, I put my head down a few times and caught a few winks of sleep. It has always been a blessing to be able to sleep pretty much on demand.

As we crossed into the Rockies the plane bounced a bit hitting mountain updrafts. I resisted the urge to do the roller coaster whoop to honor more nervous passengers. But a few minutes later realized that my seatmate was one of them. She kept pulling her headphones off and on, picking up her book for a few seconds and then putting it back down. Getting more and more agitated.

Simple questions. "Are you okay? Is there anything I can do?"

"That turbulence freaked me out and I can't relax."

First Aid attendant skills kicked in. "Hey that happens as we cross into the mountains. Where are you from?" Distraction. Bristol, UK as it turns out. Knew that she wsn't from around here from the accent. She was working for a financial firm that had just opened an office in Vancouver.

And from there we had a fantastic easy conversation. It was funny to watch her relax not even realizing that she wasn't thinking about the turbulence anymore. And when I mentioned we were landing in a few minutes, she thanked me realizing that I had put aside my own stuff just to spend some time listening to her and calming her down. With a smile I told her that it was part of what I do with patients while we are waiting for ambulances. She chuckled. "You're pretty good at too." Yup I'll take that compliment.

I said goodbye to my traveling companions at the baggage claim. Then I discovered that I was challenged trying to get out of the airport to the long term car park. I needed to ride the Canada Line Skytrain for two stations to get to the parking lot. From the departures level I could see where the train came into the airport terminal. It was one level above me. I needed to get up one more level but I could not find the way up. Being tired I only looked for a couple of minutes before I asked for help. See guys can ask for directions! It turned out it was around the next bend in the terminal. About fifteen more steps and I would have seen it.

Climbed up the escalator. And when the first train arrived it was carefully barricaded shut as they were test driving a new set of cars on a quiet Sunday evening. So wait another ten minutes for the next train. Head down to the Car Park station at Templeton. The doors opened to a horde of young people trying to push on to the train before any one was off. They actually got my drill sergeant voice, "Back up and let us off. PLEASE" and in thinking about that pushed out and headed up the escalator to exit the station. Except I didn't need to. The exit was straight ahead out of the exit gate. So back down the escalator and on to East Egypt where my car was parked. Back to the station to redeem that token that apparently I was supposed to take to Toronto with me. And finally I was out of the lot and headed toward home.

I worked in this neighbourhood for about six months so I knew my way around. Until I ran into a bunch of construction equipment. Which talking to my son Sandy on Sunday night discovered was his. Well not his but the company he is working for. He is drilling for the pipeline connecting the airport to the tank farm on the Fraser River opposite where I was working on Tilbury Island. Their truck push (in BC we call them the truck wrangler)has only been on the job a week and is pulling his hair out with the narrow streets and tight corners. Pilot cars required everywhere and truckers that do fine in the fields of Alberta not so much with city drivers in Richmond.

Back to my story. Oh and he is here for three months. Wonderful surprise. Now back to my story.

Navigated through all that and headed onto the freeway and missed my exit for the connector and the Alex Fraser bridge. Sigh. A few extra miles through the George Massey tunnel and Highway 17 but still feeling good about being almost home.

Backing into my parking spot, it suddenly hit me exactly how tired I was. And that maybe driving home wasn't the smartest thing I ever did. I have a little plaque in my bathroom that says "Never fly faster than your guardian angel." I may have been pushing that a little bit.

The next few days were filled with energy and exuberance. With the natural high that happens after an experience like that workshop, I bounced through my appointment with the vampires and the picture takers (labs and Xray) on Monday. Strolled through my appointment with my endocrinologist who said, "you will be on synthyroid for the rest of your life." in response to my question about coming off it. Irreversible damage to my pituitary. Oh well who needed that anyway?

When I gave her a copy of my feature from "Faces of Lung Cancer" she paused and said, "This is amazing. You are so easy going in the face of all the challenges you have dealt with." And I thought "Yeah and paddling like crazy below the surface to stay afloat."

My meeting with my oncologist wasn't quite so smooth. While I'm still showing no progression - the tumours aren't growing. - I have been denied the drug that I have been waiting for. Since my switch to targeted therapy with afatinib I have been quietly advocating where appropriate for access to the next generation osimeritinib. It was approved for funding on January 1, 2020 for new patients and patients with less than six months on afatinib. I've been on afatinib for eight months and so have been denied access to this drug until there is progression in my tumours.

My charming sister captured it well in a text message to me. "I hear you are a little upset at how the medical community makes decisions sometimes." Typical Pratt. Understatement of the year. Upset? Try livid. Really really angry. I came home and had a nap just blocking out the reality of it. Then I got up, got my computer out and started writing an email to everyone that I could identify affiliated with this travesty of justice. Filled with blistering language. Son of a sea serpent had nothing on my language. Alison - your trucker husband would have blushed.

And I had my finger poised over the send button when my email notification binged. A young man had logged onto cancerconnection.ca and identified as having male breast cancer. And I snapped out of my pity party. Finally after a year and half on the forum there was another guy with male breast cancer. I responded, glad of the distraction. And in that chamber of sober second thought I realized that I was reacting in a way that would utterly destroy my credibility in advocating for a difficult treatment decision.

I picked up the phone and talked to Sandra. My wonderful supportive politically astute caregiver. Two hours later I was calm and ready to tackle the issue in a strategic way. Thank you - Sandra. Oh and the irony? The young man? He wasn't a male breast cancer patient. He was there trying to figure out how to support his young female partner.

Over the course of the next few days I let news trickle out a little bit, tempering the anger with passion. Realizing that there was a much bigger issue of patient advocacy at stake. Folks in the online forum have stepped up, through research identifying key players and the policies that have lead to this unfair irrational decision. An old boss, though he hates me calling him that, spent Friday listening to my story and helping me think about what I needed to do. Church friends who when I said "I need prayer for grace and strength because I'm going to make a few bureaucrats uncomfortable." chuckled and promised to pray.

And the blessings have continued to flow. I went to my favourite Jazz Vespers service on Sunday afternoon looking for a little serenity in a world turned inside out. And wouldn't you know it? The homilies interspersed between jazz pieces were on Micah 6 from the Message:

But he’s already made it plain how to live, what to do,
    what God is looking for in men and women.
It’s quite simple: Do what is fair and just to your neighbor,
    be compassionate and loyal in your love,
And don’t take yourself too seriously—
    take God seriously."

Many of you will recognize it in its more traditional form:

    "He has told you, O man, what is good;
    and what does the Lord require of you
but to do justice, and to practice loving kindness,
    and to walk humbly with your God?"

It struck me that a church as involved in social justice as this one, undoubtedly has some political people that may be able to give me assistance. And I was right. My MP - Member of Parliament - calls this church home. A connection and a level of comfort that at least I will be heard. I have my own connection to my MLA - the provincial Member of Parliment. And so the advocacy begins. I see God's hand clearly guiding my steps.

So far this week I have been in conversation with Lung Cancer Canada (an advocacy organization based in Ontario), AstraZeneca (maker of the drug), and CADTH, the supervising body for drug funding approvals in Canada. And then a new friend who offered to put my case before an acquaintance in the Fraser Health Authority. Openness and encouragement from them all.

Why do I want this drug? Recent research has shown not only does it improve quality of life substantially but it extends life. I'm convinced that God isn't finished with me yet. Not sure why that is because as I have told some of you to your shock, "I have an expiry date. I'm ready to meet my Maker." I'm still trying to find the balance between the reality and this newfound eagerness to live. Maybe it is a master watercolour painting. Maybe it is this book that so many of you are encouraging me to write. Or it could be some one that I need to encourage in that online forum that is consuming so much of my life these days. Or maybe it is something that I don't see yet.

Seeking the path that God has for me, has me alternately feeling like Moses in front of the burning bush - "Not me LORD" and Jesus throwing money changers out of the temple - a righteous anger at injustice. Even as I write these words I'm overwhelmed by the incredible support that I have and the tears roll again. It's been a pretty emotional week.

And then curiosity as to how all this is going to come out. In negotiation we always have to ask what is the worst case. In this case? To be denied access to this drug, I think. And I'm already there so I have nothing to lose by asking that the decision be reconsidered.

Your prayers for grace and strength are truly coveted this week with the challenges that I'm facing. Thank you.