I let myself be sad today. Which is a breakthrough of sorts. Over the years, I have flipped some emotional switches to try and stem feelings of fear and anxiety and anger.
I know. Danger, Will Robinson.
Well, it backfired horribly, as any outsider might likely have guessed. Instead of short-circuiting the feelings I didn’t want to have, I amplified them. I don’t know how it works, exactly, but a professional could probably explain.
Anyway, not only was I still feeling scared and anxious and mad, but that was *all* I was feeling. All the time. Then I was down on myself for failing to be sufficiently happy about happy things, and that made the bad things badder too.
I knew something was wrong—even if I couldn’t put my cursor on it—when my dad and then my dog died. The grief, which I was accustomed to leaning into with past loss, didn’t seem as hard to process. It was there but not as intense as I would have reasonably expected.
It was more surreal than it was painful.
(Kind of like when the doctor told me I had brain cancer and instead of feeling horrified, I felt vindicated. I laughed and made a joke about my dismissive doctors from my wheelchair. Justified, but, you know, not quite what 30-year-old me would have expected from her older, wiser self getting such news.)
Back to the grief though. There’s a tendency in medicine for the main diagnosis to be The Thing Which Influences All Other Things. Once upon a time that thing was fibromyalgia. Now it’s brain cancer. And because brain tumors can cause mood changes, I thought for a while that all the pent up anxiety and mounting anger was normal for someone who’d done some chemo and had some brain cells irradiated.
And maybe it was. For a while. But long-term it stopped up my grief passage* among other things.
I know this because my mom mentioned she sold something of my dad’s this week, and I felt physically hurt in that place between my sternum and my spine. Of course my lizard brain wondered why she’d hurt me like that.
There was a giant ball of sadness in there, and I wanted it out. Posthaste.
But I have been working on myself, and I paused and thought, “Hey, this is a good time to explore the sadness instead of punching it down.”
When I held that loaf of pain** and turned it over in my hands, I realized that it was not fresh. The hunk of sadness was stale and crusty and hard. I realized I was sad because I missed my dad, not because my mom had sold a thing.
And, the point is this: in this moment I’m okay with not being okay.
When I was about 10? Maybe? I used to play Where in the World is Carmen San Diego on our family’s IBM. The den’s dark wooden shutters would be closed, and I’d put on headphones and listen to Simon and Garfunkel while tracking down a villain with a punny name, a copy of Fodor’s close by just in case I needed help with a clue.
Those earphones—cans, you might call them—were probably 20 years old. I think Dad got them when he was in the Navy. When I wore them, the painted fabric ear cushions would peel, the black fabric paint tearing off in little pieces and sticking to my sweaty cheeks.
I must’ve looked ridiculous wearing those giant things with the 6-foot-long coil plugged into the 1970-something receiver, sitting on a bookcase with a 6-cd changer, a tape deck, and a reel-to-reel.
I realize only now those were noise cancelling headphones, and I loved them so much because I was alone in my happy place listening to Simon and Garfunkel sing anti-war, anti-The Man poetry with some of the most beautiful harmonies ever recorded.
Dad had a 3-CD set. I want to say it was a collection of all of Simon and Garfunkel’s studio albums, but I could be wrong. What I do remember is the CD case was hunter green and the cover was a booklet with lyrics to everything.
In those days, I thought the whole world had learned something about war and authoritarianism and every adult was a hippie and went to Woodstock. I didn’t know I was naive. That even my own parents were squares, actually.
I didn’t know that I was the only fourth-grader on the planet who had not only heard S&G’s deepest cuts but could sing them by heart.
Anyway, Dan talked me into buying noise cancelling earbuds from Amazon this week. We needed new filters for the cat bubbler* and they had the earbuds on sale.
For the first time in 30 years, I heard everything. I thought I couldn’t enjoy music in that way anymore. Not since the brain tumor, but it turns out I just wasn’t listening the way I needed to. I teared up.
Here’s what I find frustrating about my predicament: if I over-explain people get bored and irritated and wish I’d just say what I need. If I just say what I need, I’m too bossy and not appreciative enough.
In the absence of other people with brain tumors and TBIs, I find common ground with people who have ADHD or autism. My brain can’t (not won’t; can NOT) process two things at once. And since pain and anxiety are always happening, I get extremely exhausted and extremely frustrated extremely fast.
I was trying to get three things from the fridge for lunch. Oliver was jumping on my rollator, Dan was upset I didn’t find a joke of his funny, and I couldn’t get out of the kitchen because I miscalculated my turn radius. “I can’t do two things at once,” I said for what felt like the hundredth time, “that includes laughing.”
Then I couldn’t get my Rollator—with my lunch and a cat on it—over the threshold between the living room and the bedroom. Dan was saying something behind me (I don’t even know what) and in exasperation, I said “Stop yelling at me!”
Was he actually yelling? No idea. But it felt like knives were being hurled into my ear drums, and my shoulders clenched just a little bit closer to my ears with every unprocessed word that came from behind me.
The door slammed, and Dan’s voice trailed off, “Fine. I won’t talk then.”
I ate my deviled eggs seated on the edge of the bed while muttering, “I don’t need you acting like a five year old.”
From doctors to family to friends, I am acutely aware how I can’t explain myself to normies anymore. It’s stressful and sometimes scary.
Friday morning they cut out one of my lymph nodes (my third ‘node biopsy but first excisional one) and shipped it off to a lab somewhere for examination. I should have the results of the latest lymph node biopsy within two weeks.
In the meantime, I’m feeling pretty alright. I was prescribed ibuprofen and a few oxycodone—which I wasn’t expecting—for the pain.
The procedure was done under sedation. So the last 36 hours, I’ve been feeling cozy as the anesthesia wears off and my systems come back online. Only a little breakthrough pain between doses.
Oh, and a lot of farting. My colon’s like, “Yay! We’re functioning again!”
The oxycodone makes me very drowsy, so I’ve been getting great sleep. In fact, last night was probably the best sleep I’ve had in 7 years. (I’m almost exactly 7 years out from my last surgery. You know, the brain one.)
Also, I realized something while peeing so they’d release me from the hospital: I feel more secure on a regular walker. So I just bought a used one of those puppies on Amazon for $22. That’s a freaking bargain! (I earned $18 in commissions this month, so it’s like I got it for $4. Thank you, you lovely people. I told you clicks help!)
If you’ve been around for a while, you know I did have the regular kind of walker after the 2017 craniotomy, but decided I needed the Rollator style with seat and then donated the other. (Dan has graciously not said ‘I told you so.’ Yet.)
The thing about the 4-wheeled walker variety? Good for sitting when you’re fatigued, but you need confidence that they won’t roll away from you. I don’t have a lot of that right now, and so I grip the brakes until my knuckles, wrists, and elbows are white. Which pairs nicely with my anxiety muscle aches. Too nicely. Both styles are great for different reasons, and I need both for different situations.
Anyway, did you know they’ve got these cute new charms for hospital bracelets now? Once a fall risk, always a fall risk I guess.
While going over the standard pre-op questions with the anesthesiologist, he was like “You still have the tumor?”
I was like, “Yeah. It’s a whole thing.”
Basically it’s in a spot no one was comfortable going too gonzo at with a knife.
But the tumor was a rare enough tumor, they were eager to put a few cells on ice. They sold me on the research idea by also explaining they could treat it more confidently if they knew what specific mutation they were dealing with. So a neurosurgeon did a little scrape-y scrape.
You wouldn’t believe how frequently I have to explain that to non-neurooncologists. The only thing I repeat more is how to pronounce my last name.
But I digress. (That’s how you know it’s really me writing this post.)
The lymph node was taken from my left groin. A spot not discussed during consults but the very location I dreamed about a few nights ago. Could be a coincidence, but I think I’m just really in tune with my body out of sheer necessity.
Anyway, I’m going to relax while I can. I’ll hit you all up for more clicks when the bills for this shit arrive.
One of the things I’ve heard over the years and have been reminded of recently during guided meditation is that sometimes the sun is obscured by clouds and though I can’t see it, I can find comfort in knowing it’s still there.
Well, it’s been raining here for days, and I’m starting to have my doubts the sun is real.
Just kidding. I know it’s still there, but I’ve gotta pop some Vitamin D3 anyway.
I’m approaching the seventh anniversary of my brain cancer diagnosis, which, as you might imagine, has me feeling some ways. I’ve been thinking a lot about my road to diagnosis, which led me to revisit this post about how to get your doctor to listen.
Hey, I just realized something: like the sun, my brain tumor is still there.
I re-read that post I wrote for the first time in a while and didn’t find it a trigger for my anxiety. Maybe that means the meditation is helping. I say that because once upon a time just remembering that rheumatologist’s name would make me want to key the word “asshole” into his car.
Anyway, one week until my excisional lymph node biopsy. I only have $600 in outstanding bills so far. This round of undiagnosed whatever is a lot more affordable than brain surgery.
I still can’t pay for it on SSDI, but if I make it another 7 years, whatever collection agency buys the debt might give up.