Scanxiety is real!
I have been living with cancer for 12 going on 13 years. I have had so many MRI’s, PET scans, X-rays, bone scans, DEXA scans, CT scans - and all the bloodwork you can imagine - that you would think by now I would have gotten used to it, but you know… you never really do.
When you are living with metastatic disease, progression is built into the title. Cancer progresses; that is what it does, and at some point you know that the results of one of your scans are going to come back positive. When you get scanned and tested as often as I do (which is an MRI every 3 months for the brain and spine, every 6 months for a full body PET CT, every 4 weeks for standard blood work, and every 4 weeks on an alternate week for Signatera which is a CtDNA test, along with any spontaneous blood work or scan that comes up for any other things detected by any number of the doctors that I see) you have opportunity for a lot of scanxiety.
Each test creates a vacuous waiting period in which an unpleasant anticipation invades your focus and presence and consumes your energy. Worry, fear, restlessness, and the like can occupy this space if you’re not vigilant, and really even if you are vigilant. You want to be one of the lucky ones, the outlier that survives beyond all statistics. You know that a clear test will give you more of that confidence, but it only lives in “between-test” increments; and of course, a bad test will bring on more dreaded treatment.
It’s strange, you know, because after all this time, I am very clear that I can do nothing about the outcome of this disease, and yet with each test, I go through the same emotions. Once, while waiting for scan results, I became concerned because the results were taking longer than usual. I couldn’t reach my oncologist, and I got myself worked up and anxious. I actually fainted at work. That’s just one example of how powerful scanxiety can be. I mean, we all have our little problems in life, and life stops for no one. It is important to do your best to keep moving forward, regardless of how you feel or what little dramas are playing out in your life, but at the same time, suffering alone in your mind is hard, and it has an impact whether you want it to or not. I have found that generally speaking, most (not all but most) other people will almost always have a limited capacity to be enduringly present with someone living with a long-term, terminal disease. People are great cheerleaders for short periods of time; they like to wear pink T-shirts, give donations, or get commemorative tattoos showing their support; they send texts asking how you are, but honestly not really being able to hold the actual answer. They pop over for short stints because they miss you and want to do their due diligence, but to really be present with someone who is suffering in a way that can’t be easily fixed is very difficult for people. After a while, they want you to snap out of it because It’s scary, and it’s painful to watch. It’s hard both to be the one in pain, and it’s hard to watch other people be in pain. To be fair, there is some value in encouraging someone not to overindulge in their suffering or things they can do nothing about, but there are times when someone just can’t snap out of it. What they need is acknowledgement, validation, and a safe place to be seen and fall apart. But truly, when death is involved, this is really hard to find in friends and loved ones because they are too close to it.
Especially in the US, we aren’t taught how to cope with life on life’s terms. We are taught to do everything we can to avoid it, prevent it, or control it, and if that doesn’t work, we are taught that we must be doing something wrong. If you are the one in life’s hot seat at the moment, that attitude brings a lot of shame, and if you are the one who can’t fix things, it’s easier to ostracize it or whoever is the person bringing the sadness or suffering to our attention. People want happy endings or, at the very least, clean ones, wrapped up in a bow of built-in meaning that makes it all make sense. They want to get back to their own life, their own stuff, and as a cancer patient, you have to accept that you don’t have the option to escape and get back to some semblance of “safe or not sick,” and learn to accept and honor that those who do have the option have a right to do that. You have to learn how to manage your own emotional life, on your own. Enjoy your loved ones when they can be present without the expectation that they help you carry this burden because it’s not theirs to carry. It’s yours. It’s so hard, I know, and it’s natural to want to lean on others, but it’s simply not always possible. This is hard to do without tremendous grief, but you have to try because if you don’t, you could find yourself really alone. Having isolated the people you care about out of bitterness and anger.
Trust me, I understand. I have been angry at a perceived lack of support, and I’ve envied other people’s happy lives. Their beautiful families and cute babies, their healthy bodies, the forward movement of their careers, all the sex they're having, the wine they can drink, the vacations they can go on. The bathing suits they can wear… How easy it is for them to laugh and talk about nonsense because it’s fun and light. Levity for the sake of levity - but I mean, if you don’t watch this anger and envy and work to find other ways to process your situation and cope, those feelings can take over your life.
As a cancer patient, you have to be able to apply compassion to yourself for the experience you are going through. This can be so hard, I know, and so hard when you are surrounded by normal people who can’t understand or empathize. I know it can feel lonely, but it is part of the journey of someone in this position, much like how disabled, minority, and marginalized populations have to find their path and carve out their space in the life that they have within a world that doesn’t know how to make space for them; people living long-term with cancer have to do the same. It’s been hard for me to accept how isolating and unfair having a stage IV cancer diagnosis can feel, but I have gotten better at sanitizing things and putting them in a palatable box for others, so as not to overwhelm people who are simply doing what they can to still be a part of my life. I do this not out of bitterness (ANYMORE {wink wink}), but out of accountability, a growing sense of self-regulation and self-awareness, and also emotional autonomy. If I really stop to think about it, it’s probably one of the most important things that this journey has taught me… how to be an adult. I don’t do this perfectly, obviously, and I’m getting better at being easier on myself when I mess up. Of course, there are times during this journey when you may have to close the book on some relationships for various reasons, but be thoughtful about it and try not to respond from feeling victimized. Try to respond from a new place of empowerment: when you recognize a relationship is no longer right in your life, you end that chapter with as much dignity and kindness as you can muster and move on. No blaming, no shaming, just because it’s the right thing to do.
With all that said, I had a PET scan today and, per usual, I’m having anxiety about it.
***UPDATE***
Scan was stable!