I’m a quirky kid. NO doubt about it. I have weird rituals that I participate in during intense moments of my life that seemingly make things better for short periods of time. I’m sure it’s all in my head, but it’s only weird if it doesn’t work, right? I mean, that’s what all the sports stars say. They’ll wear the same socks for an entire season as long as the winning streak continues. Don’t screw with a winning streak. Do NOT jinx yourself, no matter how weird the behavior seems.
So, when scan week comes around for Ben, I throw myself into a self-inflicted tailspin. I get super crazy. I withdraw. I obsess. I “what-if” the heck out of every scenario. I brood in the dark. I cry in public places. I hyperventilate like my plane is going down and getting ready to explode in a fiery crash that consumes my entire being in flames. And somehow, this masochistic ritual is only allowed to end when the doctor says, “Ben continues to show no evidence of disease.”
And then I’m good (kinda) for another three months until it’s scan time again.
Why do I do this? The answer is simple. There were exactly two times when I didn’t – and it did NOT go as I had optimistically planned. The first time was in 2009. Ben had been doing well for a couple of years. We were fully ready to embrace annual scans and had one more year before being invited to join the “Hope Clinic,” which I believe is the Holy Grail of cancer survival. Once you hit that five-year mark, you’re supposedly all better. You’re allowed to move away from cancer. It would grow ever-distant in the rearview mirror as normal life replaced all the nonsense. I had a feeling of euphoric joy as we were leaving the hospital after those 2009 scans, only to be crushed a few hours later with news that a new tumor had been found.
Then, just a year ago, Matt was driving Ben and me to the airport for scans in Kansas City. I remember it was a sunny day. As we were pulling out of my apartment complex, I said, “I feel good about these scans.” Matt said he did, too. And within a few days, we would be crushed again by the news of another relapse. So, I had two times of optimism destroyed by neuroblastoma giving me the finger… I kinda don’t trust it anymore. So, my superstitious nature takes over.
My mom once scolded me for being superstitious around scan time. I was kinda peeved that she didn’t mention it before – like maybe when I was a kid and developed my superstitious nature. According to her, I hadn’t added to her happiness OR her back health by avoiding stepping on cracks. That means I did a lot of extra maneuvering on the sidewalk for nothing. She was also suggesting that it was okay to walk under a ladder (I still will NOT do that.) I also had a long-standing uncomfortable relationship with always looking at the clock at 12:13. ALWAYS. It meant something weird. I just knew it. I’ve made peace with 12:13 now, but the rest of my superstitious nature is still intact.
The funny thing is, I know this is nonsense. It doesn’t matter what I say or do or how long I go without shaving my armpits or if I walk down the stairs backwards while humming the National Anthem of France. I have no control. It doesn’t matter how hard anyone prays. Or how many people say “He’ll be fine. I just know it in my soul.” I used to live for people saying that sort of stuff. Now, I realize, that even doctors don’t know. Ben’s New York doctor said, “I believe Ben is curable.” I ate that up. I wanted so bad for that statement to be true, so hearing it from a professional was the shot in the arm I desperately needed. Too bad that doctor just didn’t know. I was mad for a while about her false advertising. But I realize that she was just being hopeful. Hope goes a long way. But hope is tricky.
I know I’m sounding defeated. That’s not what I mean. I am hopeful. I’m just saying that the two times I got overly confident, hope kicked me in the butt. I’m kinda tired of being kicked, especially when we’re already down.
So, for the next few days, expect me to be cranky. Anxiety-riddled. Irritated. Weepy. Withdrawn. Scared. Pissed to no end that we’re still at it. All with a side of hope. Just stand back and let me do my thing for a couple of days, okay?
I guess I can call my state “optimistically superstitious.” But, hey. Whatever works, right? We’ll get through it.
We always do.
Ugh, I hate scanxiety. I too have my own superstitions, I think it’s more common than we know in our world.
(after this last relapse) I will never ever comment optimisticaly (sp?) on Ben’s scans. I cried for days thinking I jinxed him, although I KNOW better. Never. Again. Good luck on surviving another bout of scanxiety.
Oh Shelly. Please don’t do that to yourself. That thought never crossed my mind… I’m sorry it crossed yours. I love you! xoxox
Can’t stop it, Sarah. Leftover from my own superstitious scanxiety ways. I KNOW better, but I am not taking any chances! Love you!
Scanxiety was supposed to leave my life but it is here to stay. Thinking of you!! Stay strong Mom!! Much love to you both
Wow!!! Awesome writing – again
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