Take all your reasons and take them away
To the middle of nowhere, and on your way home
Throw from your window your record collection
They all run together and never make sense
But that’s how we like it, and that’s all we want
Something to cry for, and something to hunt.
Are we gone
Come on yeah, we know we’re gone
Bye bye bye
Bye bye bye we know we’re gone
We’re out looking for astronauts, looking for astronauts
We’re out looking for astronauts, looking for astronauts
It’s a little too late, too late, too late for thisIsn’t it a little too late for this?The National, “Looking for Astronauts”
Two weeks. Sequential in order, but otherwise quite different.
During the first, I was off chemo. We took the kids to Cedar Point for two days. I soaked in their excitement and happiness. I held their hands. I snuggled up for photos. I enjoyed every moment. My husband and I went out to a concert. We sang. We lived. It was almost like a week off of cancer. Almost.
The second week crashed down hard; chemo, doctor’s appointments, discussions of scans and alarming tumor marker results, a local opinion, and a trip to Cleveland to follow up with two of my surgeons. Every day and discussion filled with reminders of the disease I have, where it is going, what could and should have been done differently, and how little sense all of this makes.
And I am tired. I am tired of thinking about it, tired of talking about it, and tired of trying to figure all of this shit out.
The older I get, and now especially with everything I’m going through right now, the more I discover a simple truth. And that truth is that the world we live in just DOESN’T make any sense, and it is never going to.
We build constructs around ourselves, around our work cultures, around our medical institutions, around our Governments. We trust constructs because they make us feel order, they make us feel safe, and they make us feel sane. We don’t want to look inside. We don’t want to face the reality of the circuses that are going on within them.
My culture raised me to trust in those establishments, to trust in authority, and that old men in suits always had the right answers. My experience taught me that title, character and position very often don’t correlate, and that old men in suits don’t really have all of those answers; only the confidence that they do.
One of the hardest things for me in particular has been trying to figure out how so much knowledge, talent, ignorance and stupidity can all exist at the same time, in the same place, in the same room, and even within the same person all at once.
Brilliant institutions led by the morally and/or intellectually bankrupt. Brilliant minds with blind spots. Brilliant surgeons who walk into surgery knowing less about my scan history than what I’ve highlighted in the binder in my backpack. Who don’t sit down and plan out everything that should be looked at and covered during my surgery. Who don’t remember what was discussed at our last appointment.
I think about the risk assessments my team was required to do when my job involved planning an acquisition and spending money. How could this same thing not be done, when the risk affects a human being’s life and prognosis?
I ask my surgeon what he thought and why he didn’t remove an ovary that had a 4 cm x 3 cm mass on it as of scans 2.5 months prior to surgery and has now grown to 7 cm. His answer? I am going to have to go back and check my notes. Because he doesn’t remember the surgery. Because he was focused on the colon mets and colon resection and didn’t look there even though he told me months ago that he would. And he didn’t look there because he probably never even read the scan describing the mass in question.
But wait, those things don’t really happen. Except they do. Every day, and in every place title and position embedded within our safest constructs. They are still just people. They are just like you and me. And they make mistakes all of the time.
Before going back to see my surgeons yesterday, I already knew that mistakes were made, but I also knew that they were mistakes; not intentional. Another thing that I knew was that this was the only team that had decided to “color outside the lines” and do this surgery to begin with. My options keep limiting. Anger isn’t going to help me, and anger isn’t going to keep those options open.
I didn’t sleep much the night before. I spent the morning anxiously preparing what to wear and how my hair and make up should look. Side note- never underestimate the value of pigtail braids. I’ve worn them to poker tournaments so other players will underestimate me. I’ve never worn them to a bar without getting carded. And I’ve worn them to doctors’ appointments to remind them that I’m young. Staring in the mirror with my heart pounding in my chest, all I can think is- Do I look young enough? Do I look pretty enough? Do I look like I’m someone worth taking another chance on and worth saving today?
And then there is tone. I should smile when the surgeon enters the room. I should shake his hand. I need to be direct in my questions, but use the right inflection so that they don’t go on the defensive. LEAVE THE DOOR OPEN. You may need them to take a chance on another surgery in the future. Even though you know and they know that they messed up. Not advice I would give my daughter. Not advice I would normally give ever. But yesterday that went out the window. The stakes were too high.
Was I successful? Is the door still open for another surgery? Possibly, and possibly not. I am back to chemo with no idea whether it will work on the ovarian met, or that it will still work on the ones in my liver. In several weeks I will have new scans and go back to them and see.
That I even have to be in this position is bullshit. But the world we live in is bullshit. And it can’t be fixed. The bullshit of why I got colon cancer to begin with (why me and not every unhealthy, overweight person I see eating funnel cakes?). The nonsense of what could/should have been done better in treating it. I could go insane if I wanted. But I don’t have time for that, do I?
Awareness is sometimes just recognizing the the inevitability of all of the nonsense. It’s not the exception; it’s business as usual. Awareness is recognizing it for what it is and then leaving it in its own mess. Awareness is realizing that I have done all that I can for now.
Awareness is also seeking out the things that aren’t nonsense, and holding on to them as tightly as I can while they are still here. It’s taking that trip back to week #1 and starting over again. The laughter, the smiles, the precious expressions of affection. The way the clouds move. The way the breeze feels on my face. Before the inevitability of the nonsense tries to push it’s way back in again.
The North Sea of My Mind 