Another week, another machine
And some thoughts on continued existence
This past week I spent calculated amounts of time strapped into this giant Kitchen Aid mixer.
At least, that’s how it feels when I lay on my custom-padded table and the various arms of this radiation zapper start to rotate and whir around me to target my tumour. It both live-images what’s inside me while also making minute adjustments to the photon rays blasting at my pancreas. There are no radioactive isotopes here. The light that was once manipulated by the Dutch masters is now manipulated to destroy cells. What a world.
I’ll endure one more week of this as we await the return of my t-cells from their west coast reprogramming adventure. The radiation experience itself hasn’t been terrible—the side effects and medications required are more formidable than my chemo experience, for sure. That has been unpleasant. I’m left quite tired and in some pain and needing to manage my digestive health more closely. Being on a low-gas diet means temporarily abandoning most of the foods I enjoy the most. And unfortunately the week started with the grand reveal that some of my white blood cells were lying down on the job site, requiring an injection that left me reeling with bone pain for a couple days. That was obviously not an expected component of the radiation treatment plan. I think I’ve talked about the bone pain thing before so I won’t rehash it here.
Anyway. Strange to say, but the efficiency of the radiation treatment process almost unburdens my mind to the point of enjoying it. Twenty minutes in-and-out compared to hours of doing bloodwork, waiting for chemo drugs to be mixed and hooked up to me, meetings and consultations. I lay down on the table, the various pads and cushions are positioned and inflated to prod me into the exact pose needed. Lasers are calibrated via three tattoos that were poked on my abdomen. Straps are placed on my legs and stomach to make sure I don’t move too much. I look at the stickers of dinosaurs and cars that some tech has stuck to the machine to distract a younger patient. And away we go.
On another plane of contemplation, during one of my oncology team visits this past week the social worker assigned to *gestures vaguely* my situation asked about how I’m mentally holding up. I mentioned I’m trying to write a bit to process, but that the normal tenor of my life is obviously still changed. I am a task-oriented person, and so my task right now is making it through each day. I would love to be the person who uses this time to continue to read and research. I am exceedingly jealous of things I see others doing on Substack and social media. And I do read some things here and there. I am probably spending far too much time consuming pointless media as a distraction to make it through each day.
But I’m not sure I understand the passage of time at this moment as capitalistic apportioning of minutes and seconds anymore. I am waiting. I am both actively and passively participating in medical processes, but overall I am just waiting. A slightly different perspective from “mountain climbing” that I previously held.
It has also been frustrating to internally balance being an insular person and a social body. I make absolutely no apologies for devoting the vast majority of the energy I do have to my family. But undeniably I feel a sadness that I am unable to reciprocate the love and care needed to maintain and balance relationships right now as I wait. Again, I know there are no explicit expectations put upon me. To those of you who have messaged me or emailed me or sent me memes and I’ve not replied, or given the least human effort to acknowledge, please know that I do care. I deeply appreciate being kept in the various communities who are watching out for me, wanting me not to feel ignored, and otherwise keeping a door open to when life looked a bit more “normal”. And may perhaps again some day. But I will fully admit that I am exhausted in every sense of the word.
Two final words for this instalment. In a couple weeks I will be coming up on two anniversaries that are unfortunately now forever tied together by their close proximity: my wedding anniversary and the anniversary of the event that ironically set all of this off. I’m probably not going to talk about the wedding anniversary here; there are more complex thoughts and reflections better left as conversations between my partner and I.
As to the second anniversary. There were obviously things brewing inside my body well before I attended a Sour Beer Festival event with my friend James, but it was the incredibly delicious beer I consumed on that day that set my initial pancreatitis into overdrive and started all this. I will always battle the thought that he might feel guilt (or something) over this event, and when/if you read this, James, continue knowing that I’m actually more glad for the fun of that day, and especially that such an abrupt change in health drew attention to the underlying disease already present. Who knows how long this could have been drawn out, and literally there is no greater combination of food and beverage (fantastic burgers and beer that tasted like Mountain Dew) and friendship that I could have possibly wished to be the avalanching boulder.
Except maybe pizza and bourbon. But I’ll save that for some other health crisis in the future.
Pizza and bourbon pairing is also a favourite of mine - just for future reference. 🤓