A 96-Hour Journey Into Scanxiety
Not all mental health issues look the same. Follow along as I come to terms with my own coping mechanisms.
NOTE: This post may be too long to be read in an email. The whole thing should be visible on the Substack website or the app though.
As mentioned previously here, “scanxiety” is the building anxiety in the days and weeks before an MRI, PET, or CAT scan. And then it continues until you actually get results. And since most cancer patients get scans on a regular basis for many years, if not until the end of life, it can become a big deal for many.
I have a confession to make though: I never really thought I experienced much anxiety around scans… that is until I tried the little experiment that you are about to read. Did I get post-scan anxiety over things like “pseudo progression”? Sure. But scans themselves? Not really. I might worry a little for some of them, but I’ve been fairly laissez-faire for most of my now THIRTY-SIX MRIs.
But that was when I thought of anxiety in the very traditional classical form of just being overwhelmed by worrisome thoughts. And honestly, I don’t usually think much about how my next set of scans is going to mark the beginning of my inevitable demise. Scans are just scans. No real worries. Or so I thought. As you are about to read, I’m not so sure that’s the only way anxiety rears its ugly head with me. I dunno, maybe I’m wrong. I’ll let you decide.
Friday, October 6, 2023, noon-ish: It is roughly 96 hours before my next neuro-oncology (NO) appointment to review the MRI images that will be taken the night before that appointment. I have decided that I am going to document the days before this series of events to see if anything interesting happens. Like almost every time I hit this point of getting MRIs every three months, I do momentarily wonder if I’ll get bad news with this one— but per usual, the worry passes as I remind myself that I feel relatively ok so I’ll probably get yet another stable result. No heart palpitations or shortness of breath. My balance is a little wonkier than normal but I’m also a little extra tired from bad sleep. My deficits always gets worse whenever that happens.
For those who may not understand what “stable” means— it’s about as good as it gets when a brain tumor can’t be fully removed. It means there’s no sign of any tumor progression. Most brain cancer docs won’t officially use a word like “remission” because brain stuff is too sneaky for that. There are other terms like “dormant” that are less reassuring but hey— us cancerfølken will take what we can get.
Friday, October 6, 2023, 7 PM-ish: Just under 90 hours to go. Still no real anxiety so I instead choose to use this time to share my list of my perceived “wrongs” with my wife Cecily and how she has made me feel despite the fact that I am being fairly myopic and self-centered in my brutal assessments. But I move forward anyway because I’m a stupid male. And I’m definitely not feeling like I need to make sure someone needs “pay” in advance for even the smallest past slight in case I get bad news. My wife starts crying and points out how she would rather have me with a brain tumor than not at all even though it makes me act weird some of the time. Okay, a fair amount of the time. Instead of getting my passive aggressive kicks, I just feel like an asshole. A lonely asshole who has forgotten how to connect with someone I love very much in a healthy way.
We went out to dinner with some friends and the kids. I got overwhelmed and paranoid by my inability to keep up with seemingly normal conversation. I may have even gotten overly defensive about the lyrics to “Mack The Knife” and Bertolt Brecht’s “The Three Penny Opera” in general. My brain started glitching as it does when I get overstimulated so I found a dark quiet corner away from everyone and filled-out an online interest form with an assisted senior living service. They then immediately called me three times in 10 minutes.
Saturday, October 7, 2023, 3 AM-ish: I woke up in the middle of the night thinking about how life might be like for my family if I were to die in the next few months. My girls would be able to split my music stuff up pretty evenly, but I do need to organize all of the videos I’ve made of and with them over the years onto a single hard drive. I’m fine not dying at home cuz I don’t want it to freak my family out by leaving behind the one room “where dad died” or the memory of seeing me take my last breath. I’d rather my passing not be in a hospital, though, so maybe I should make a list of assisted living/hospice facilities nearby. I hope they have halfway ok food and good streaming options. I need to finish watching a few things before I leave this planet.
These are all definitely normal thoughts and I feel pretty calm about it all. I guess it’s ok that I filled out that online interest form 8-hours ago.
Saturday, October 7, 2023, 5 PM-ish: OK— 43 hours. my balance is haywire today. I didn’t really get great rest last night so maybe that’s why I feel like I’m stumbling around and zig-zagging wherever I go. I have been stopped in the past by “concerned citizens” who want to shame me for day-drinking even though I’m completely sober— just compromised by brain cancer— so this might be another one of those times. I have a nasty headache which is kind of odd for me. Usually my headaches are the low level annoying but manageable kind. Could it be tumor growth? I remind myself that my tumor location— brain stem and cerebellum— isn’t really associated with headaches so this headache on the opposite side of my skull is probably completely unrelated. Unless, of course, this is something new. Nope, this is normal. I always get headaches right before scans and they go away after I get my “stable” result.
The senior living service is still calling and leaving me messages pretty much hourly. I’m not ready to answer or return any calls yet.
.Sunday, October 8, 2023, 9 PM-ish: I’m about to go to bed. I spent some time this morning stretching my neck and massaging my eyes in hopes of relieving some tightness/pressure I’m feeling in both. Not much help really. My long-time friend Chris arrived a couple hours ago from Cincinnati where he lives to drive me to my appointments at Duke University.
For those that may not remember, my treatment gets overseen by a brain tumor specific hospital because there really aren’t any in the state (Tennessee) where I live. Vanderbilt in Nashville seems fairly reputable but still, brains aren’t really what they do and it’s still a bit of a hike from Knoxville.
I’m dependent on rides because I’m not supposed to drive. Seizure risk, easily confused in stressful situations, etc. My wife couldn’t really easily get the time away from work to make the trip so Chris was kind enough to offer to take me. I really appreciate Chris spending time away from his family and I am wondering what people do in less population-dense areas that don’t have a “Chris” to take them. I’m so grateful and looking forward to spending time with him. Just him being in our house for the last few hours talking to me about random music stuff and our kids has helped me feel somewhat normal. It’s a pretty good distraction from the non-anxiety I’m experiencing.
The senior living center service is now emailing me, too. A lot.
Monday, October 9, 2023 1 PM-ish: I woke up around 5 AM this morning to get my things together for the two-day mini road trip. I was ready to go by 7 even though we weren’t planning to leave until 11. I was able to sneak an hour nap in before waking up “for real”. We left around 10. With roughly 24 hours to go in this process, we’re about halfway through the drive to Durham, NC. I'm dragging ass fatigue-wise and really struggling to stay awake. I share a few songs from MY ALMOST FINISHED ROCK OPERA with Chris and I really notice how muddy the mixes are. He gives me a few helpful notes and we make a few stops.
Before we left, my wife tells me to call her during the appointment. She thinks it’ll be stable just because I seem to be doing well. I restrain myself from explaining that “how you feel” has nothing to do with it despite me mentioning that it has a lot to do with it earlier in this post. I honestly don’t know but it makes me feel good to think that it has a lot to do with the scan outcomes. And being contrary— even if just in my head— makes me feel like I’m an expert and somehow depersonalized from any negative results. Still, I put aside any childish petulance and tell her that I love her before we leave.
Monday, October 9, 2023 6 PM-ish: I just went to dinner with my friend Chris at a restaurant that I’ve eaten at several times prior and… it was interesting.
I ordered shrimp fra diavolo with capellini as I have in the past. And as in the past, I enjoyed it.
Well, until I didn’t.
It didn’t seem like it contained any bad ingredients and I was careful not to eat too quickly. Yet, I had to get up to find a restroom. And quickly. Yet, I got disoriented and somehow wound up in the restaurant’s kitchen instead. I was greeted by our waitress, but before being able to ask where the restroom was, I was head first in the nearest trashcan. She brought me several paper towels, water, and told me to worry about any “spillage”.
I eventually made it to the restroom where I tried to freshen up, but wound-up losing more of my ‘lini instead. Let me tell you that you haven’t fully lived until you go to blow your nose and out comes a noodle doused in spicy tomato sauce.
I was sure to tip the waitress extra before we left. We are now back in the hotel and, having showered, I’m trying to collect my thoughts on what just happened before heading to my MRI appointment at 7:30.
Monday, October 9, 2023 9:30 PM-ish: . My MRI is done so now it’s just a waiting game on results. I do have to mention that my MRI wasn’t as smooth as it usually is. I can be a “hard poke” due to rolling veins, but this one seemed to be extra hard for the hospital staff to handle. I managed to barely avoid having to wait on an ultrasound nurse to help out. But during the MRI, I started getting all itchy and sneezy which extended the duration of the scan well beyond 45-minutes for do-overs (my MRIs usually last 25-35 minutes). Afterwards, a radiation doc came to check on me to make sure I could breathe well enough. All was fine and I was instructed to take benadryl prior to future scans as I was likely developing an allergy to the Gadolinium contrast media used.
There’s roughly 15 hours to go until my NO appointment tomorrow. I’m sill getting calls and emails from the assisted living service.
Tuesday, October 10, 2023, 7 AM-ish: Alright, I woke up and am getting ready for my NO appointment in a few hours. Chris and I will be checking out a local breakfast spot before hand. Hopefully no puking today. Cecily (my wife) said she’d have the girls call me on their way to school but so far nothing. Is this some sort of message about how they don’t care? Oh wait… they’re just getting up around now and won’t be heading to school for an hour. And dang… I’m looking at my toenails and I really need to cut them. Wait… Cecily and the girls are calling now.
Tuesday, October 10, 2023, 12 PM-ish: I’m in the waiting area to see my NO. Breakfast was successful though I was sure to eat light. My balance has been especially bad today. No falls but the ground feels extra unstable beneath me. They’re calling me in early now!
Tuesday, October 10, 2023 2 PM-ish: OK, so I just finished my follow-up appointment my NO. I generally see a physician’s assistant (PA) prior to seeing my NO. My PA is generally great and very attentive to details. Her job is to share basic test results and speak with me for a bit about concerns and such to make the time with my NO super efficient since she obviously has limited availability. Duke is a teaching hospital so I’ve gotten a few different PAs over the years. I really like my current one. But you wanna know something really annoying? Almost without fail, every PA I’ve had has the habit of delaying test results with basic “how are you doing?” type small talk. I regularly have to ask to just find out if I’m stable or not before we go any further. I’m not really bothered by the specifics of my situation. I just want the headline. Can I relax now? I’ve spoken to other brain cancer patients who’ve experienced the same thing at other facilities so it must be part of the training or something. I suppose there’s a good reason for it, but I’m not a fan.
So am I stable or not? Scroll down.
Why yes, I am stable. I think you already knew that though. Do you think I would’ve shared all of this if it didn’t have a nice ending? I honestly don’t know the answer to that.
But you know what? My neck cracked loudly and my balance improved dramatically as I left the Tisch Brain Tumor Center at Duke University. I even had enough energy to maintain relatively coherent dialogue going with Chris on the long drive back to Knoxville.
It seems that learning that you’re not likely to die just yet can go a long way to making you feel better— especially if you don’t recognize all annoyances as just another form of anxiety. I’m curious how this knowledge will help me on my next scans in three months.
I dunno, have I made things worse by focusing so much on the minute-minute analysis this go around? Aside from the restaurant mishap and the allergic reaction, everything else is pretty typical if I really think about it honestly. Maybe there’s something to living in denial, but I’d like to think that tackling these things more honestly is more helpful in the long run. I mean, everyone knows that if you reduce stress that you’ll feel better. And if you feel good, then you probably won’t get any bad scan results. Right? Right?
The kitchen staff did seem entertained. The rarity of such things likely explains it.
1. This is an excellent, useful, thoughtful peek behind a curtain most of us don't get a chance to see, so thanks for sharing so candidly
2. You and Celery are bad asses
3. I don't think I've ever blown an actual noodle out of my nostril, but I know that feeling too well. And, I wish someone had run into the kitchen of a restaurant where I was working to puke! We never had anything cool like that happen, except the other cool stuff I'll eventually write about.