It has been a strange week, though one that is kind of the norm these days. I had my CT scan on Tuesday. And now I wait for the results on Monday. When people ask "How are you doing?" the answer has been " I'm in limbo." I'm changing it down a little bit from scanxiety. In the back of my mind I know that one of these times I'm going to get the news that there is progression and I will be into the next stage of treatment. And I"m trying largely successfully to keep those thoughts in the back of my mind and not let them preoccupy me.
In the larger picture I live from three month CT scan to three month scan. I came across the perfect word to describe the state I find myself living in. A long discredited theological theory of a holding place between earth and heaven. Purgatory.
I was listening to a pod cast by Kate Bowler, a professor at Duke Divinity School. She was interviewing none other than Alan Alda of MASH fame. (https://katebowler.com/episode-7-alan-alda-full-transcript/ ) Turns out he has spent the last few years trying to help doctors and scientists communicate. In a strange twist during the interview, the interviewer (KB) became the interviewee (AA.)
Here is part of the transcript from the interview:
"KB: I was in that trial for a little over a year, and then I stayed on that drug out of the trial, and I get scans every three months that let me know if the tumors are still in check. And so it’s just like purgatory, I guess.
AA: That’s interesting. None of us want to believe that we’re going to die.
KB: Yeah.
AA: And you’re, in a way, put in a position where you have to think of that.
KB: Yeah. But even I can’t think of it, like, I really, it’s an impossible thought. How could you possibly imagine your heart not beating, and you know, all the things that make up who you are?
AA: What do you think about … This is really interesting. When you think about what….I imagine you think about it more than most of us do because it is what you’re struggling with. What do you think it would be like? Do you think that you do have a vision of what it would be like to not be here?
KB: It’s funny. The second I got sick I started to think of my mental processes as “double brain.” Like one part of my brain is exactly the way I was before, where I always imagined everything’s going to work out. And I’m making plans to, you know, run a marathon, or at least try 5K again. And then the other part of my brain is always making plans that I will come to the end of myself, and that I will have to be making plans for a life for my family beyond me. And they’re always running concurrently, which is exhausting. It’s like I’ve got two decision trees to make for any major decision, like saving money, or do you get a house?
As she talked I heard my own forked brain and when she called it "purgatory" it resonated with me. You know you are dying. That you are going to die. And yet you feel alive. If anything you have more reason to live than ever.
She calls it "Double brain." Your mind runs on two tracks. I'm not going to be here for the long term. And on the other hand I still have to live. A trivial example would be the dish soap I bought the other day. The last bottle lasted me a year and a half. I actually thought "Will I be here to finish this one?"
There are more serious examples. I had a tooth filled last week but there is a chance that it would turn into a root canal. So a filling is easy. It will make my eating much more enjoyable. But if it is a root canal it is much more invasive and expensive. If I'm going to die is it really worth spending the money? I had the procedure and it was only a filling but it was a decision that took a bit of thinking about.
The short term thinking associated with purgatory plays out in other ways too. I was at an organizational business meeting and several people asked me to take a position with the organization. But it is a three year position and I realistically don't think that I have that much time. So I said no.
And then there is prayer. How does this wacky kind of thinking affect prayer?
I had a friend come up beside me after church a few Sundays ago. After putting his arm over my shoulder he looked me in the eye and said "I'm praying for your complete healing."
I stuttered, completely taken aback at the audacity of his prayer. "I don't even ask for that. I do pray on a regular basis that I will be a witness to God's grace in my life. And to me that is all that I can ask." And the conversation has stuck with me. How great is my faith?
A month ago I asked for prayer in church because I was meeting with my oncologist on Tuesday. I expected it to be routine but still - it was on my mind. I did my labs on Monday checking my liver and kidney function. My thyroid levels are part of that too. When I got home I found I had missed a message on my phone. "Mr Pratt - You missed your appointment today and we have rescheduled it for Thursday at 4:00pm."
Great! So I have all these people praying for me and they are going to be praying on the wrong day. Wait. I didn't miss my appointment, it is scheduled for Tuesday and it is only Monday. I had a number to call back to confirm the appointment. So I called. Voicemail system. No provision for questions. Oh and by the way I realized that my Afatinib prescription would run out before the new appointment and I have a sense that it is fairly important not to skip. Maybe a day but by Thursday afternoon it would be two days. So I tried a couple of other numbers trying to find a real person instead of voicemail.
Finally I found someone who when I explained the situation told me that the doctor had changed his clinic days. I wasn't crazy or forgetful. They had rescheduled it for him, not because I had missed it. The prescription question though she couldn't answer. She put me through to my oncologist's secretary. She took a message. A few minutes later called back to report that he was just leaving but he would leave a prescription at the pharmacy. He had looked at my labs and the Xray and they looked good.
So when my phone rang about noon on Thursday and when the caller ID said "BC Cancer," I'm thinking "What? How could I have missed it again?" Imagine my surprise when my oncologist introduced himself and asked if this was a good time to talk. He said "You have your prescription and unless you have something pressing I don't think I need to see you this afternoon." I didn't have my little questions card in front of me but I did remember that I wanted to talk about the blood that I was seeing more regularly in my stool. He didn't think it was from the medication but suggested that I go to my family doctor to get it checked out. Which I have done and I'm now waiting for an appointment for a colonoscopy since the GP didn't find anything that would explain it.
So how am I spending all this free purgatory time? Well I have nine watercolour paintings going into an art therapy show this week. I"m amazed at the progression that is emerging as I spend time struggling with this art form. Very rewarding to see progress. Not that I'm going win any awards or make a million dollars.
And I took the plunge with NaNoWriMo2019. National Novel Writing Month is celebrated in November of each year. And I am at 40,000 words of a 50,000 word goal. It is going to need a lot of editing but I have learned that it is doable. And I have learned a lot about writing. I have done some writing of short stories, poetry, and lots of sermons but never anything of this magnitude.
Plots? Who needs plots... Yeah well next time I will. I started with a theme of journey and two very different stories that I thought might come together in some sort of climax. One is an alcoholic's struggle with alcohol seen through the eyes of a codependent and the other is a Sea Scout adventure story with (I think) smugglers though it started out with the idea that there would be a wild storm at the climax... Anyway I'm curious to see what the final product looks like.
I promise not to wait for eight weeks for the next newsletter. In fact there will probably be a short one next week to let you know whether I have the three month reprieve or if I am on to the next chapter.
And let me leave you with this final thought from Psalms - one of the Song of Ascents or as Eugene Peterson styles it in the Message:
A Pilgrim Song
Psalm 123 1-4
I look to you, heaven-dwelling God,
look up to you for help.
Like servants, alert to their master’s commands,
like a maiden attending her lady,
We’re watching and waiting, holding our breath,
awaiting your word of mercy.
Mercy, God, mercy!
We’ve been kicked around long enough,
Kicked in the teeth by complacent rich men,
kicked when we’re down by arrogant brutes.
Thanks for your prayers.