I’ve blogged before about what I call my “internal detection system”. I feel like I know myself pretty well, having ripped apart my psyche at age 29 and stripped it down to the studs before slowly rebuilding it and putting it back together. I did it on my own in the sense that I bounced ideas off friends rather than using a professional-trained therapist, and while it should have come with a warning, “Don’t try this at home. Closed course. Unprofessional driver.”, the real outcome was that my internal system responds to being poked by me.

Take for example something really inane like, umm, going to a store and being upset by something that happened with another customer going through the line. Most of life is pretty obvious why something bothers you, but maybe sometimes it isn’t. In those circumstances, when I’m reviewing my day mentally, I might go, “Hmm…why did that bother me? Was it because of X?” And then my internal system responds. If the radar lights up, yep, that’s what it was and why.

A lot of people have this, but for me, it is finely tuned to my own vagaries. I don’t want to know that it bothered me that a person was rude to someone else, that’s more of a level 1 response, I want to know if at level 2, was I bothered because I felt it was undeserved (even if none of my business) and the person was just being unreasonable. Or perhaps a level 3 type response where I had thought the second person deserved SOME sort of response, and yet I thought it was too rude, but then I sort of felt culpable because I thought they deserved something. Or maybe I am reacting at level 4 because it reminds of how I interacted with someone in the past, etc. While I am more than capable of turning myself into a squirrel, I can work through the various deeper responses in about 10 seconds flat. I’m not agonizing over trivial matters, I’m just reviewing why something bothered me to see if maybe my body or mind is trying to tell me something else. Occasionally, I joke with myself that is more of an “emotional resonance scan” (borrowing from MRI and CAT scan terminology).

But, as I said, it works pretty well. About 95% of the time, I can exactly pinpoint what it is about something that is resonating. It’s not perfect, and I can miss stuff if I’m emotionally blocked for some reason (like with grief) or overly-emotionally invested in an outcome. But the rest of the time? Poke 1 — is it X? No. Poke 2, is it Y? No. Okay, Poke 2,3,4,5,6,7,8,9 is it ABCDEFGHI….?

A partial resonance response

This was a big week in Casa PolyWogg. As you will know from reading my blog, Andrea has been in chemo since March, going for back-to-back doses every 4 weeks for six cycles. This week was the last week, cycle 6. A big deal just for that alone.

But she had two other appointments on top of that, I had to go into the office one day, I was meeting a coworker for coffee while I was there, and oh yeah, I’m working on a huge report for work that needed to be finalized this week. A few other things on the list, but those were the main ones.

Yet as I started the week, I felt something odd. Fear and dread. Misplaced fear and dread, obviously.

So I poked myself…am I fearful of something with the chemo? No, not really. A small resonance, not strong, so likely partly related to it. Yet what would I be stressed about with her chemo? She’s already done 10 doses, she had adverse reactions for doses 1a, 2a and 3a, but that drug isn’t part of her regimen anymore, so no worries there. The remaining drug is one she handles fine, so definitely not a cause for worry. My body said, “Yep, totally agree, it’s not that.”

Okay, so I moved on. Is it work? My body said, “Sure, there’s a lot going on, need to finalize, it’s a fair amount of work, important stuff, but that’s just background noise. You’ve got this.” Okay, so not the work stuff.

Maybe going INTO work? Nope. I wasn’t looking FORWARD to it because I had to clean up a box of messy files to get them sent to storage, none of which were mine but I inherited them from someone else when I took the job, blah blah blah. Annoying but not anything to fear. And I was meeting a colleague and former mentor for coffee, first time in 2+ years, not stressful either. I was looking forward to it. I was’t working a full day, no batch of meetings, nothing to figure out for office space, etc. So not that either.

Something with Jacob? Nope. Nada. No resonance other than ensuring he’s doing SOMETHING each day instead of sitting on his butt playing video games. This week was a writing camp, last week was gearing up for mini-golf with a friend, etc. General parenting stuff, nothing that looks like fear.

I did a rough scan of other stuff on my mind, standard stressors around managing money, planning, my own health, but it was all noise. Nothing that should be producing a sense of fear.

Digging deeper

As I said, I got a partial resonance on Andrea’s treatment this week. Which, again, made no sense. It’s all good news, isn’t it?

She’s done six treatments. Her side symptoms for her legs and breathing are resolved. She would get her PICC line out this week. And her Pleurex as well (the side drain to get fluids from around her lungs out). All of it looks good, right? No resonance. Full agreement, there’s no reason to be fearful.

I stepped back and said, “Okay maybe it’s logistics?”. Was I worried about getting her to the four appointments this week? No, they were scheduled well enough in advance, I was pushing the envelope adding in some other errands on the margins, but nothing big. Not a scheduling fear, or worry that I would screw something up.

I wondered perhaps if I feared it wouldn’t happen? She had dinner with a friend last week, and two days later the person reported exposure to COVID. Andrea wasn’t sick, no symptoms, but when she notified the hospital of the situation, they collectively all went, “Hmm…let’s get back to you on if you can do it this week!”. A friend who went through breast cancer had commented about the stress of it feeling like the finish line kept being moved, but that wasn’t it for me, no resonance.

I poked the fear again. Maybe it’s not fear? Maybe it’s just stress? Nope, doesn’t feel like stress. Stress is a general tension, this was more acute. Like “run away, don’t poke here.”. What the heck? Maybe general anxiety? Small blip. What the HELL? A blip for general anxiety but not for everything else? How does THAT work?

When a blip gets louder

Okay, some sort of anxiety and related to her treatment. Huh? That made NO sense at all.

Okay, let’s unpack it piece by piece.

Big chemo on Wednesday, dose 6a. Anything with that? Nope, all good.

Final chemo on Thursday, dose 6b. Anything with that? Small blip.

PICC line removal? Small blip.

Pleurex removal? Small blip.

What else was she doing this week…oh, right, she had her final appointment with the doctor just before the last chemo to review her blood work and stats. Big blip.

Wait, what? A blip for cancer treatment, blips for final treatments, blips for things being removed, and a big blip for her bloodwork?

How could that be? All of those elements are positive. She was getting her final dose, the side symptoms have resolved, the tubes were being removed as not needed any longer, and her stats showed that by pure numbers, she’s officially in remission range. While the type of cancer isn’t curable, she’s ready to be declared officially in remission. Big giant blip.

Ohhhhhhhhh.

I know what it must be, seems obvious right, I’m afraid it’s not all done and I’m waiting for the other proverbial shoe to drop, right? After all, tons of people experience that, it’s normal. Zero blip. I don’t disbelieve any of the tests. I don’t disagree that it is all good news. I don’t believe there’s another shoe to hit the floor.

Soooo, I’m just afraid…of the good news? Giant fucking blip, bang the gong, that’s it, stupid, took you long enough (my resonance scanner has a cruel, snarky side).

The fear that cannot be named

I realized what it was, poked myself, full resonance, yep, that’s it. I’d read about it. I’d heard of it. I’d never really experienced it before.

Researchers themselves have trouble naming it, partly as when they do see it, it’s part of a giant spectrum of situations, and most don’t know if it’s the same thing or something unique. Take child abuse victims who go through the foster care system, the proverbial “stereotype” of the outcome that you see in books, and TV or movies. The person comes out the other side numb sometimes, even with potentially anti-social behaviour. They then meet someone, the person appears to love them, but they have trouble believing in it. They can’t trust that what they see is real and not a giant prank from the universe, and so they run the other way. They have trouble letting themselves be happy.

Trauma specialists see it too. Soldiers coping with PTSD, unable to see a day when things will be better. Similarly for severe depression, the sense that things will continue as they are, that things are beyond your control. That fate will kick your ass regardless of what you do. That the gods laugh while man plans. Meds can help alter the way negative assumptions control your views of outcomes, but the struggle is real.

Those are obvious extremes, of course, and my role in accompanying Andrea on her journey is not so acute. Yet I knew what was bothering me.

It was all good news and I didn’t trust any of it. I don’t mean, I thought it was wrong, I believe it is true. Objectively. But subjectively, I couldn’t let myself trust it. I wouldn’t let myself trust it. Because if I was wrong, my psyche wasn’t likely to survive.

I feared hoping too much, too soon.

Andrea believes me a pessimist, and in comparison, I am. But in this case, I fear that what I’m looking for is a sign. Lots of people complete chemo, doesn’t mean they’re done. Lots of people have good stats, doesn’t mean they’re done. Same for the elimination of symptoms.

A release

For me, naming fears is my first step to releasing them. Once I know WHAT I’m feeling, and why, I’m not afraid of it. I can lean in, I can compartmentalize, I can stare it in the face and say, “Hello fear. What are you up to today?”. Emotional fears, at least. I may choose NOT to do that at times as I might feel it will be more destructive than creative, but I don’t have to hide. Once named, I’m good to go. Rumpelstiltskin, perhaps, applied to emotions.

And with the naming, I could unclench my jaw a bit. I knew what it was, and it therefore has less control over me.

Then, for Andrea’s last treatment, I joined her at the hospital. I was there for dose 1A, but for the rest, I wasn’t allowed in. To some extent, I know that made it seem less real to me — I dropped her off but I didn’t sit with her while she did it. The rules for visits have changed and I was allowed back in.

For the last treatment, the Medical Day Care Unit has a small internal ritual. In this case, it’s a small gong that you bang with a small hammer for your last treatment, the staff and some patients clap, you celebrate, and you head for the exit! Start the car!

The gong made Andrea release a bit, but then we were out the door quick, and as soon as we were out in the waiting room and alone, we both released completely. A long sobbing hug to celebrate that she has done it. She has kicked cancer’s ass, we think, and she’s done. At least for now.

Sure, the realist is still there. 3-5 years average remission rate, maybe 10. Still highly treatable but not curable. No impact on life expectancy. We had ice cream to celebrate, we’ll do cake on the weekend, a nice dinner next week, maybe other celebrations with friends and family in the weeks to come.

Yet I want the doctor to examine her in 3w (as he will), check her stats, check her xrays, check her bone marrow, and say, “Yep, it all worked as it was supposed to, no signs of anything.”

Until then, my stress is down, but the fear of hoping too much remains. It’s not rational, I know that. Everything says, “Hurrah”. But my heart won’t let my head and my head won’t let my heart get too far ahead of each other. I don’t know which one is lagging behind, doesn’t really matter probably.

I just know for me it is a fear of hope. And that is the second scariest fear I’ve ever seen.

The first of course is the fear of losing Andrea or Jacob. But this one runs a pretty close second in its perniciousness. But if Andrea can kick cancer’s ass, maybe I can kick my own.