It's That Time of Year Again

 It's coming up to that time of year again, my annual check in with the brain tumor center. This year, as I prepare for my visit, I thought I'd walk you through what it's like. They tell me that rehearsing the scene is helpful, so you get to do it with me! We get going really early in the morning. They typically have me do my MRI first thing so that the imaging will be ready in time for my appointment with the doctor. Traffic at that time of day is terrible, often 2-3 hours for a 35-mile commute, and my husband is a "five minutes early is ten minutes late" kind of guy, but on steroids. So, for an 8am appointment, it's common that we will leave around 5-5:30am. Much of the commute will be stop-and-go, but odds are we'll get there more than an hour early anyways. We do a lot of early! I guess that's better than late though.

 We circle downward into a parking garage. Getting there so early, we can often get a spot on the highest floor, but sometimes we'll have to spiral further and further under the building (please God, don't let there be an earthquake while I'm in here!). After gathering up all the supplies we'll need for the day, we head inside. First stop, imaging.

Image credit: CoPilot and me

 

 No, the waiting room will not be this empty, even at 7am in the morning, but I had a hard enough time getting CoPilot to make the image without an MRI table in it, I wasn't going to mess with patients! This is fairly accurate, though. On the TV screen there is occasionally an image of a bunch of medical equipment being sucked into an MRI machine, warning people of the dangers of magnetism. That's fun. I rarely wait more than 5 minutes to be called back, and that's even with arriving an hour before my appointment. This is where my husband and I have to part ways, he's not allowed back in the imaging area. That's hard because this is where things get really real for me.

 They take me back to a secondary waiting area where I'm given a locker to keep my things in and provided a gown, pants, and rubber-soled socks to change into. Everything comes off because you never know what might have metallic threads sewn into it. Then I get to wait in a nice, reclining chair - sometimes they even have an option to heat it, until a nurse comes to place my IV. For the type of brain tumor I have (not sure if this is true for all types), they need to add contrast during the MRI for it to show up best, so they plug that into my arm in advance. That's not always easy with me and sometimes takes several tries, or even several nurses to get it done, but they've always managed it eventually. After a while, someone comes to escort me to a tertiary waiting room, just outside the MRI suite. It's usually just a couple of the same chairs, but they're backed up to a wall, so they won't recline and most often the heating feature doesn't work on them. Then, eventually, the light on the door of the suite changes, someone comes out, they clean it up, then invite me in.

Image credit: CoPilot and me

So, this is an AI recreation of an MRI machine room, and I know it's not terrible technically accurate, but I felt like it gave you a general idea. They have me sit on the bench and insert ear plugs - the machine gets REALLY loud. Then I lay back into the head cradle. Before closing it up, they put the black headphones from the side on me and ask what kind of music I'd like. I've tried all kinds of options, including having them play one of my playlists, but that never worked out. I usually stick with jazz or worship, depending on my mood. They'll place a pillow under my knees and ask if I want a warm blanket. If I'm very cold I'll say yes, but otherwise I skip it as it gets quite warm during the imaging and there's little worse than the claustrophobia of an MRI tube with huge, machine-gun noises going all around you, than to have it be stuffy and hot in there! The technician presses a button that slides me into the tube and then heads out of the room. There's usually a mirror at the top of the head cradle so I can see out of the tube, and they often have some sort of art on the wall to look at, but I tend to just keep my eyes closed. Sleep is not an option for me, though I've heard of others that are able to take a nap during the imaging. My husband takes a nap while getting a filling, so I guess it takes all kinds! About two-thirds of the way through, maybe 20 minutes in, the tech comes back to administer the contrast liquid. That's a strange feeling, almost as though I just peed myself. Then they slide me back into the tube and finish the scan. You know they're watching it and they see everything, but they're not authorized to read an MRI officially, so they always come back in to get you with a deadpan expression, not letting on at all what they saw, and they won't give you any hints if you ask either. They open the head cradle, remove the headphones, and take out the IV, replacing it with a gauze pad and Coban to hold it on. They'll escort me back to the secondary waiting room where I retrieve my belongings from the locker and change in a little closet. Then I head out to the waiting room where my patient husband is always present. I think if he had to go to the bathroom or die, he might die rather than not be there when I came out!

Image credit: CoPilot and me

 Next, we head to the cafeteria for breakfast, and sometimes lunch. Often my next appointment won't be until 1 or 2 in the afternoon, so we settle in. We'll bring games and laptops and find ways to kill the time. I usually eat some sort of scramble with eggs, potatoes and sausage - there aren't many gluten free options available. Every once in a while, the cafe is open and I can get an oat milk latte. I've written several blog posts from that cafeteria while waiting for an appointment - did you suspect that? I always expect the wait to feel like forever, but it typically goes faster than I thought. 

Before long, it's time to head up to the brain tumor center and another waiting room. This wait is typically longer than the imaging one, but they eventually come out to get me and bring me back to one of seven identical consultation rooms. They're all lined up along a hallway with floor to ceiling windows on the other side. They have a sliding barn-style door which leads into a small room with a few chairs, a desk and a counter. 

 A technician will readjust my VP shunt in my skull using a tool like this. It has a magnet and a dial that they first measure the original setting with, then attempt to adjust it. I say attempt because sometimes this process also takes multiple tries, multiple machines, and even multiple techs! But, often, they get it quick and easy on the first try and we move on. When the doctor is available, she comes into the room and, almost invariably, tells me there is no real change. She'll walk us through a digital image overlay of today's imaging with one from 2023 (August is my preferred one) and we'll "see" how it looks basically the same. I put see in quotes because I can't tell anything from what she's showing but she and my husband are appropriately convinced. We'll go over my current symptoms and determine, once more, that radiation would only make them worse instead of better, so we should make an appointment to come back next year and do it all over again. 

Image credit: CoPilot and me

 Except, one day, the message will be different. The tumor will have grown more than 20% as far as she can see on her preferred program (as opposed to the radiologists' measurement which has shown far more than that growth already), and she will recommend that it is finally time for radiation. And that's when my husband and I have to make some hard decisions. That's when the clock starts. From that point, whether we choose to do radiation or not, the vast majority of cases like mine (there aren't many the same as mine so we have to make some generalizations) end after a few years. Two? Five? It's not an exact timeline, but not many, that's for sure. So, do I go through the misery of radiation for an overall hopeful improvement in the quality of life of my last few years, or do I just let things take their course? That's a problem for another day, hopefully.

Here's the Thing: Even knowing the likely outcome, these hospital days are heavy with the possibility of the worst-case scenario. Leading up to it, I alternately avoid thinking of it or talk myself into believing it'll all be fine and I'll just make another appointment for next year. But I can't completely banish the specter of maybe, lingering in the back of my mind.