January 3rd, 2024
Another Wednesday infusion session. We drive to Brighton for the routine labs and getting my port rigged up to properly funnel the poison directly into my chest. I meet with my oncologist and everything is very mundane. We have done this countless times now and it all sort of feels like running through the motions. Football season is winding down and I’m sporting dual allegiances with my Lions hat and Michigan sweatpants. Conversation with the PA and oncologist is quick and to the point as it normally is. Just making sure nothing strange is going on that could affect our ability to go through with the infusion, and of course I’m feeling great. Just checking in for my bi-weekly medically induced flu. We speak briefly about the prospect of histotripsy and it seems like a potential option. My oncologist is convinced that a combination of histotripsy and traditional resection methods could get us where we want to go but of course the white-whale of transplant still looms in our conversations.
Transplant seems entirely fictional to me in this moment. I have been pining after it for almost 7 months. I did all my work-ups and passed all the tests. I am a candidate. People have come out of the woodwork to be a donor for me. Over 50 people had submitted their information and attempted to be a suitable donor but for one reason or another they all were incompatible. It seems at this point the only thing left is the Hail Mary pass, a deceased donor. It’s incredibly improbable. I have to be one of the lowest, if not the lowest, on the recipient lists, though my short stay in the hospital just a month or so ago when I had astrovirus has bought me a few extra MELD points. I have sort of given up hope of this as an option. We had gotten the call before, and it had never panned out. We had 3 different calls that were all relatively close together starting back in late summer that had all fallen through. I wasn’t holding my breath in any regard for a deceased donor organ to make its way to me, and certainly not without the organ itself being a total reject riddled with hepatitis.
We make our way over to the infusion area. I always liked having my treatments done in Brighton. It wasn’t any closer for us than any of the other locations. Heck, I’m just as close to the actual Cancer Center if I wanted to go there, but Brighton was always efficient. Parking was easy. It was convenient in all the right ways. I turn the corner to check in and before I say a word they know who I am and are getting my wristband printed up. When I get called back I know the drill and start to answer questions before they’re asked of me, “Andrew Sweeney, 10 09 1990. They took my vitals before my pre-chemo visit. No symptoms, I’m feeling pretty good.”
I’m here so often that they know my preferences. At one point I asked someone if I could have a stretcher instead of one of the incredibly uncomfortable reclining chairs, and that request stuck. I’m put in a room with its own sliding glass door, dimmable lights, and a stretcher that while not my idea of comfort is significantly more accommodating of my 6’5” frame than any of the other furniture options. As I sit down I’m greeted by a Christmas stocking shaped to look like a maize and blue mitten. The infusion staff had put them together as a gift to all of the patients around the holidays and I had just missed out on one at my previous infusion just 2 weeks prior. I dig through the mitten and immediately remove all the candies it holds and set them aside for when I need something sweet (I pop one or two in the moment, who am I kidding.) There are colored pencils and word puzzles and a number of other time killers. A really thoughtful little gift I still have sitting beside my nightstand as a reminder of that day.
Another thing that I always liked about doing my infusions at Brighton, aside from the staff who all knew me and were so kind, was the snacks… well actually THE snack that I would always get. Great Lakes barbecue chips. I don’t eat barbecue chips that often but those are phenomenal, and it’s the only place I would get them or knew that I could get them.
Ok, back on track. The nurse gets my premeds ready and as I always do I fight the taste of the premedications with a handful of altoids. I watch as the cloudy white substance makes its way through the tubing and into my bloodstream. As soon as it no longer has clear liquid ahead of it in the tube the taste becomes overwhelming. I throw the altoids into my mouth and hold one or two between my molars like a cyanide capsule that I’m ready to chomp into if it all gets to be too much. I shiver remembering the taste, it really is horrendous. After all the premedications it’s time for the real stuff. The Panitumumab is up first with blood pressure checks every 15 minutes. Kelly brings me my snack and it helps to mask the fact that I am about to drift into my hibernation cycle. Around this time we jokingly say goodbye to each other because despite any of our best efforts I just am not me for the next couple of days. I close my eyes and take a little nap.
Once we wrap up the rest of the regimen we get my take-home pump all set up and strap it around my waist. At this point I can feel it, and it’s time for the most movement I’ll do for the next couple of days, the walk to the parking lot. We head for home to put me to bed.
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