And That Was Week 1

"3.6 Roentgen... Not great, not terrible"

There’s a lot (too much, actually) to unpack from the week+ prior to the actual start of the treatment protocol. It began with me signing paperwork to enroll in a post-treatment immunotherapy trial. Sadly, this set off a series of unfortunate events where my pre-treatment consult, my start date, and all of my chemo days were cancelled and removed from the schedule and… well… no one bothered to tell me.

I found all this out when I showed up at Emory Midtown for the cancelled consult appointment. My thoughtful calm response was to tear into four different Emory administrators including the director of the clinical studies program. It turned into a most memorable day.

The end result was that my first treatment day (chemo + radiation) was moved to Tuesday 5/31. Also, remember how the immunotherapy study was randomized so that I had a 50% chance of being placed in the cohort receiving the immunotherapy meds vs. the observation-only group? Well I found out that I was slotted into “ARM-A” which means I will be receiving the immunotherapy meds. But I’ll likely never know if and how much my tirade tilted that decision. ¯\_(ツ)_/¯

After yesterday’s radiation session, the week’s totals are one chemo infusion (out of 7) and four radiotherapy sessions (out of ~35). So how am I feeling? Not great, not terrible. Tired with some mild side-effects, but also mindful that the impact of chemo and radiation are cumulative over time. So… I’m bracing myself.

I thought I might share a little of the treatment details for those who are curious.

There’s really not much to the chemo piece: show up at the clinic, catheter is inserted in the arm, blood drawn, lab work completed, cleared for infusion, start with a bag saline, a round of anti-nausea meds, a bag of highly-toxic cisplatin, and then a final bag of saline. Roughly a five-hour process.

The radiotherapy (for me, anyway) has been much more fascinating.

Early in May, I was brought in for the “simulation and education” session. The primary goal of this event was to get me onto the treatment table so the techs could work out the positioning, measurements, metrics, and markers needed to make sure that my head and shoulders are in a precise position on the table.

An initial step was to mold a pillow that cradles my neck and head in a set position. The next step was to take a large sheet of meshed plastic and toss it into an oven. Once the plastic was warm and malleable, it was placed over my head and shoulders, molded to my facial contours, clamped tightly to the table, and then allowed to cool and harden.

Here’s the result.

Having one’s head and shoulders enshrouded in mesh plastic and then clamped to a table can be… somewhat unnerving. I’ve been tolerating it fairly well. But I can imagine how this must feel for anyone who suffers from claustrophobia or the aftermath of trauma.

The treatment room is reminiscent of a workshop or a lab set built out for a ScFi movie. Allow me to introduce the centerpiece: the Varian TrueBream radiotherapy system.

This beast is mounted on a gantry that allows it to rotate its photon accelerators around the patient. It has two fold-out arms that allow for on-the-fly x-ray imaging to confirm the target and positioning. During the treatment phase (which lasts roughly two minutes), the primary linear accelerator is firing a focused bean while one of the sidearms is delivering a cone-shaped pattern at the target. All the while the machine is turning on its gantry. Cool, huh? Except for the fact that it’s basically designed to destroy the DNA of the target cells so they are unable to divide and spread… which… one would hope are mostly the cancerous cells.

The room itself is very utilitarian with the patient restraining masks hanging from the wall and a stereo playing oldies R&B during the sessions. Yesterday’s soundtrack while I was on the table? Barry White’s Never Never Gonna Give You Up.

Based on the doorframe, I’m estimating the entire space is enclosed in roughly four feet of lead shielding on all sides. The tech team sits in a control room outside the shielded area using monitors and imaging to guide the treatment.

After four trips into the clinic, the staff is starting to recognize me and I’m noticing that some familiar (if masked) faces walking in the door. It’s becoming a regular Cheers neighborhood bar, no?

So all-in-all, week one has been…

Okay, time to cut the crap.

Does it sound like I’m trying to put a brave face on all of this? Because that’s exactly what I’m doing.

I’m having moments where I can keep this “all in perspective”… where I can “focus on the long-term” and “keep a gratitude list” going. But those moments have become more fleeting with the start of the treatments. After week one, I’m feeling not great, not terrible. But this will likely be the best that I will feel for at least the next several months. And sometimes that can be hard to face when one wakes up in the morning.

Ugh. I went all dark-mode again, didn’t I? Mea culpa. But that’s the inconvenient truth of where I am at the moment.

Probably best if I spend some time this weekend working on my perspective, no? Have any thoughts or suggestions? Feel free to share them in the comments.