About 2-3 three weeks ago it started- the “Scanxiety.” If you are unfamiliar with the word it refers to the anxiety cancer patients get around their upcoming scans. These scans (and tests) are a part of active surveillance, or the process by which your care team monitors you to see if cancer has come back and/or has spread to a different body part (aka recurrence and metastasis, respectively). Usually it is seen as a 5 year period with scans and testing starting frequently and then eventually tapering down. I currently go every 3 months for MRIs, CT Scans, blood tests, urine tests, and more. I joked initially that I’d go every month to make sure I am okay to which my doctor told me that the radiation would not be advisable.
So yeah, Scanxiety crept in. I could feel it- I was annoyed, worried, anxious, and more. I bring this up in therapy and a great solution is proposed. I was to be intentional with all my free time- plan things to do to stay busy and distract myself. “Great,” I thought, “I can do that.” I was already thinking about things that needed to get done or places we could go aaaaaaaaaaand then I got Covid. 2ish years or so and I had avoided it that whole time and now it strikes. So now instead of staying busy I was sitting in isolation for days with nothing to do. My mind was racing- going from worst case scenarios to best case scenarios and every rationalization in between and wouldn’t you guess it- none of it worked.
Luckily we have every streaming service ever so Netflix and For All Mankind kept me busy enough outside work. Fast forward to my first day out of quarantine and I go straight to my scans on a Friday morning. I have since learned that this is a rookie mistake, you want to go on a Monday to avoid a weekend delay. I was on the hard table with a nice warm blanket and I’m getting ready for the noise and breath holds that would be coming shortly. I also had to get contrast injected via IV, another needle in my arm that week. Everything was fine but while the contrast was being injected I could feel liquid running down my left arm. Here came anxiety again, “Is it blood? Will this make my tests look clear when they’re not? They can’t hear me, should I squeeze the emergency ball but what if squeezing that starts the whole process over and……?” So I made the wise choice to just sit there with a wet arm until it was done 15 minutes later.
When it was done and the tech came in I informed her of my not-dry arm and she said “No, nothing happened. It’s just the sensation.” Okay I thought, she knows what she’s talking about, even though she is using a few towels to wipe my arm and the table for some reason. Anyways, it was fine and I made the drive home to check MyChart obsessively the next few hours. I was fortunate as the scans were ready that day and my oncologist even sent an ‘all clear’ note attached. Phew, kind of. I still had to discuss the blood tests the following Monday. I did feel some relief over the weekend though and was able to distract myself and enjoy most of Saturday and Sunday while Monday morning was filled with work to occupy the time. I didn’t start feeling the fear until I turned to finish the last few blocks to the hospital.
I was lucky enough to get a parking spot right by the front door. This had to be a good sign right? Or was it a sign that I’m getting closer to cancer? Thanks anxiety!
Into the door and a few feet away is the cancer center. It’s nice, you get a side entrance feet away from your destination on the ground floor. Either someone really thought this out and wanted to provide meaningful accommodations to cancer patients or they tucked the cancer wing down the hall, out of sight and away from the main entrance of the hospital. I joke of course, everyone there is great and really caring. Buuuuuuuut there is one little thing that is always, let’s say, “fun.” Inevitably the drill upon arrival is always the same, “Can you verify your name and date of birth?” “Joseph Jantke, April 11th, 1985.” And this happens about 3-6 more times every visit. Some of the really nice patients just yell that to the front desk like robots instead of saying, “Hello” and “I have an appointment…” All of that is okay though, I know it is a necessary protocol. The interaction right after is always fun though. It is generally the same with some variation on: “Oh wow, you’re young to be in here.”
I get that there’s no intention to offend it’s just that no one wants to hear it. Also what is the sweet spot age-wise on getting cancer? Is 49 an amazing age to get cancer? More than that though it just reinforces that this situation is not normal, even for cancer, and the fear, shock and disruption of this still lingers. So I was on deck for my blood draw. After some delay over my involvement in a research project with my blood samples (I’m special), they were finally able to draw my blood. The nurse felt around for a vein and gave up on my arm pretty quick and went to the top of my hand, my favorite place to be jabbed with a needle. Armed with a large war bandage on my hand I made my way to the exam room.
The walk is always like a hallway of possibilities. Many of the doors are opened, showing people of various ages, various stages of treatment, different cancers, different situations. You think about how your situation can be better or worse than it is. You may feel lucky or you may feel sadness at your current prognosis. For me, I’m hopeful and lucky on one hand and empathetic and cautious on the other. It’s not an easy walk at all.
Blood pressure’s a little high at first but comes back down, definitely a little on edge. A short wait later and the doctor walks in, asking how I am. I appreciate the warm demeanor but I want him to barge in and yell the results at me. Luckily, a whole 30 seconds later, he says we’re all good. “I can breathe a little more now.”
I call my wife, then my mom, and then email my Gilda’s Club group lead. I blast music on the way home and feel the weight drop off. I actually feel happy and at ease for an extended period of time. I’m hopeful and smiling. I have an appointment with my nephrologist the next day and all positive news was shared there as well.
So what now? Well I get about a 2.5 month break from Scanxiety. Then I go back in for the entire litany of tests again right before Christmas. In the meantime, my solo kidney has some small kidney stones still. I have to drink even more water, take a pill, and avoid foods high in oxalate which surprisingly is in a lot of fruits and veggies. Then, around Halloween, I get to pee in a jug for 24 hours, again, and then send some urine through the mail to a scientist.
And therapy, lots of therapy still. While I feel hopeful and optimistic there’s still fear. Cancer is always going to be lurking. It’s like a neighbor in a 2 flat. Sometimes you can’t help but notice or get upset by them and sometimes you forget they’re there. Some days it won’t cross my mind and others it does multiple times. I am hopeful though that it fades a little over time with more positive news and negative tests.
If you’ve read this far thank you but I am apparently near the email limit. The internet is telling me to shut up and log off so away I go, pretty sure I’m Cancer free (for now).
-Joe