Less and less is my life about cancer, and more and more about living each day. A few days ago I used the phrase "the drumbeat of approaching death" with a close friend. The immediate reaction was "Is this your way of telling me that there is progression?" No it isn't. It is a struggle to live with the reality that someday this drug is going to stop working. There won't be many options.
Though as time passes, the number of options grows, there still won't be much. I watch others that I have met on this journey die. I know that my time is coming. While some of you will dismiss it as "We're all going to die." there is something that brings it into sharper focus for an advanced cancer patient.
I have been reading this prayer from Thomas Merton each morning for the past several weeks. It captures for me my hope and my relationship to a power greater than myself.
My Lord God,
I have no idea where I am going.
I do not see the road ahead of me.
I cannot know for certain where it will end.
nor do I really know myself,
and the fact that I think I am following your will
does not mean that I am actually doing so.
But I believe that the desire to please you
does in fact please you.
And I hope I have that desire in all that I am doing.
I hope that I will never do anything apart from that desire.
And I know that if I do this you will lead me by the right road,
though I may know nothing about it.
Therefore will I trust you always though
I may seem to be lost and in the shadow of death.
I will not fear, for you are ever with me,
and you will never leave me to face my perils alone.
What would an email update be without an update? Not much of an update I guess. I met with my oncologist about two weeks ago to review an interim X-ray. Not that you see much on an X-ray, but it gives us both piece of mind as we stretch the three month scan to four months. There was no change.
But two other things happened that were much more important. I know hernia surgery may not be the most exciting thing. I have been living with it for two years (surprised me too when I checked!), it is good to have someone pay attention. I've been stable for awhile. I'm not suffering major side effects. I am waiting for an anesthesiologist to review my chart. He will decide if he can put me under for laparoscopic surgery. The alternative is going to be heavy sedative and an open cut to insert mesh. A few weeks and I'll be back to running though I'll be limited in how much weight I can heft.
The other thing was that I got a White Ribbon picture with my oncologist. I started with lung cancer advocacy shortly after my diagnosis. Since that start, The White Ribbon Project is the most exciting thing to come along. Started by a frustrated lung cancer patient in Colorado, the basis of the movement is a hand crafted white ribbon. I say hand crafted because the makers cut it from plywood and it is sixty cm high. A decal proudly proclaims "Lung Cancer Awareness." And believe me it is a conversation starter. You can't tuck this puppy into your purse or even my appointment bag. I have taken a few strategic photos with mine. I handed out a few to other patients and important people in my treatment team.
A few other things have come up as I speak out about lung cancer issues. The Lung Health Foundation asked me to speak to a Parliamentary briefing. My topic was importance of biomarker testing in the treatment of lung cancer. That talk led to an invitation from AstraZeneca to speak to a group of upper level pharma executives. I gave them the perspective of an advanced lung cancer patient. I have been helping Lung Cancer Canada in develop a position on early vaccination for cancer patients. Our survey found that social media was important for vaccine information.
In the next few weeks another digital short story will come out. Written in conjunction with the Canadian Cancer Society, I did the production of this one on my own. "Complexity - Journey with Advocacy" shows the parallels with my mother's advocacy in breast cancer and mine with lung cancer.
Changes are afoot with my church membership. The first step was for me to resign my role as a lay minister. Grace Lutheran has been my church home for the last twenty years. Unable to cross the border there was a growing disconnect. Though they have been faithful with zoom meetings, now, I am the only one taking advantage of them. They are meeting in church under strict distancing guidelines so there has been less and less need for zoom.
Several years ago I began attending a Jazz Vespers service. They held this Sunday afternoon service at a local church, Northwood United. That attendance grew to include regular practises with their church choir. I sang occasionally on Sundays for special songs. I have been attending their services on YouTube for most of this year. Several months ago in a zoom coffee chat, someone asked why we didn't watch the service together on zoom. When I offered to try hosting it, I was taken up on the offer. On Easter Sunday we had 25 cameras watching with us. Since several of those were families or couples, it was a pretty exciting time.
When the lockdown began, I tried cajoling several choir leaders to try virtual choir work. I finally found another group that was doing it in a local church. My first try was a bust, the music was too unfamiliar. But the next song was "Be Thou My Vision." And the game was on! Forty five takes later... Yeah this is not easy.
I was doing it all myself, so I do need to cut myself some slack. But getting both a clap at the start for synchronization and the down beat to start singing - impossible. Add in some word changes to move to more gender neutral language. Complicated doesn't begin to describe it. Then of course there is the challenge of reading instructions. Record in landscape mode not portrait; use the front facing camera, not the selfie camera; and don't use zoom all necessitated a few extra takes each. But the final product? Well worth it I thought. Feel free to watch the whole service but here is the choir performance https://youtu.be/R1dm-m6_ypg?t=2314
Speaking of links, about a month ago I spoke at an AlAnon speakers meeting. The host recorded it and it is available. In the interests of the traditions of anonymity, attraction and not promotion, I'm not publishing the link here. If you wish to spend 45 minutes listening to how AlAnon changed my life I will send it to you privately.
As time goes on I find myself drawing closer and closer to the Psalmist. You can imagine when I discovered this passage in my daily reading how excited I was. Taken from Psalm 34, it reflects a new understanding of God for me;
1 I bless God every chance I get;
my lungs expand with his praise.
2 I live and breathe God;
if things aren’t going well, hear this and be happy:
3 Join me in spreading the news;
together let’s get the word out.
4 God met me more than halfway,
he freed me from my anxious fears.
5 Look at him; give him your warmest smile.
Never hide your feelings from him.
I'm often asked why I am so vulnerable in sharing my thoughts and feelings. As I contemplate my "God with skin" in folks around me, I have a responsibility to share the blessings and comfort they have given me. Thanks.
Fair winds and following seas.