In the middle of covid, chemo, and a wave of Christian nationalism, I panicked and wondered, “Are my parents Nazis?”
I asked this question of my sister-in-law who assured me they weren’t Nazis. Later I felt silly. Of course they weren’t, but also? Being a Nazi isn’t the political dead end it used to be. My anxiety didn’t just materialize out of thin air.
On any count.
My sister-in-law brought me back to reality. It was one of several times I’d need someone to flex some stability on my behalf, as it turns out. After being diagnosed with brain cancer and hospitalized during the narcissistic presidency of Donald J. Trump, I’ve been floundering a bit.
I don’t know if others felt this way after watching 2016 and then 2020 in real time, but I’d already been through some shit. Trump was and is a horror all his own, but he often reminded me of other trauma too. In ways I either wasn’t prepared to cope with or I wasn’t capable of processing.
Or both, maybe.
Having so much time to overthink through treatment was not good for my mental health. I wouldn’t have been able to articulate or understand my growing anxiety then, but retrospectively its presence is very clear to me. And with hours every day for years to think about it? And my ability to hold a pen and Zentangle (hopefully) temporarily gone?
Fucking yikes, kids.
There were signs early on. Like that time I surprised even myself by hyperventilating when my dad and I didn’t agree about cops. My mind went from reasoned to reactive in a nanosecond, convincing me my entire life was a lie and no one could be trusted.
Anyway, the point is not to relive, it’s to remind myself I’m making progress. Even on the days it doesn’t seem like it. I can breathe through panic now, and that’s something. Plus there’s a tumor on my lizard brain. That probably has an impact, right? I can cut myself some slack.
Yesterday started off okay, but went downhill quickly. In addition to my own personal prednisone hell (the intense muscle pain has arrived), the scheduled murder of Marcellus Williams weighed so heavily on me.
Poplar Bluff, Missouri is the headquarters for the General Baptist denomination, the evangelical denomination I grew up in.
When I was in my teens in the mid-90s, a year or two before I was old enough to vote, the church passed out a voter issue card.
I don’t remember much about that card except that it was arranged in such a way that abortion was the thing we should all be paying attention to. It was the central issue to voting like a real Christian. (Which is why Moreno’s comments are laughably dangerous to those of us paying attention.)
I didn’t understand then how intentionally the card was designed to prevent the General Baptist Church from rendering unto Caesar.
At that same time, my best friend’s parents had a bumper sticker on their van that said “Save the baby humans.” Again, I didn’t realize until I had moved away years later—and started putting the pieces together—the sticker wasn’t a genuine plea to stop clubbing baby seals. The graphic of the baby seal pictured to the right of the text was meant to be provocative.
When my friend’s family was shopping for a new church, she asked her parents why they couldn’t go to my church instead of First Baptist. (She had a crush on a boy in my Sunday School class.)
“They don’t believe ‘once saved always saved there'” my friend told me. That was the answer her parents gave her.
The Southern Baptist Church they’d landed on was just a few ticks south, but still on Main Street. I went there a couple of times with her, once for a Bible themed costume party because Halloween was satanic or something. I don’t recall the reasoning anymore.
If you can call something like that reason.
My childhood church’s pastor was recommended as a friend to me on Facebook in the 2010s. He had an openly gay son, which Facebook also taught me. The pastor was not Facebook friends with only one of his own children, which seemed cruel. (I checked his mutuals to see if I should follow through with the add.)
When I Googled the pastor out of morbid curiosity, I learned the pastor worked for General Baptist HQ in Missouri, and he had written some theological rationalization for why homosexuality was wrong.
Fundamentalism.
Though I couldn’t have defined fundamentalism in my tweens and teens, in my adulthood it all made so much more sense. Not in the logical way, but in the “dude, that’s fucked up” way. I had grown up in a small town surrounded by uncaring, unchristlike bigots. I was sheltered from most of it, being a homebody, so the awakening rocked my world for a while.
After high school, I learned that one-time best friend went to work for a faith-based crisis pregnancy center. When she got married, she tried to have her own child without success, until (praise God, I guess?) a doctor figured out the reason for her body’s refusal to carry a fetus to term.
I wonder now how that one-time friend feels about Amber Nicole Thurman, but I don’t honestly have the heart to investigate. Maybe she, like me, has eschewed fundamalist bullshit, but it would be too much to learn she hasn’t. So I live in a different kind of ignorance now.
Similarly, it took me hours to summon the courage to look at the headlines about Marcellus Williams this morning. Leaning into that sorrow after spending hours last night in extreme pain and fatigue, might be too hard for me.
See, I contacted Missouri Governor Parson’s office yesterday trying desperately to appeal to his better angels, but when I saw on the official governor’s page that “Governor Parson has a passion for sports, agriculture, Christ, and people”?
I instantly knew I’d be grieving this morning. For Williams. For his family. For the fundamentalist at heart.
“Sorry, you’re getting a mom-elette.” Dan said. I had to ask what that meant, but it made total sense once he explained.
“Oh yeah,” I laughed. “I didn’t know fancy restaurant omelettes weren’t folded in half like tacos until I was in my thirties.”
I have been ravenously hungry since 5:00 a.m. So hungry that I Rollated my way to the kitchen for the tub of mini chocolate chip cookies to quell my backbone-gnawing stomach and get back to sleep.
By 8:30 a.m., I was begging Dan for an omelette. He’s an excellent cook anyway, but the prednisone enhances his reputation. I scarfed it down and told him probably about 30 times with my mouth full of food how delicious it was.
I’m starting Day 4 of my dose pack, and just so you all can understand a little better, when I was on dexamethasone and trying to wean for about a year? That was like taking steroids on steroids…on steroids.
Anyway, Dan was delighted to see the cookies next to me in bed this morning. “Oh my god, Swiss! Did you go out to the kitchen by yourself?!”
“It was sketchy, but I didn’t want to wake you up.”
I was pretty far gone symptom-wise, so the impact of the prednisone isn’t going to be as helpful this go-round. But I’m grateful to have the meds (and a little bit of my self-confidence) back. Even if it doesn’t last long, I have earned some relief. It’s nice to feel more steady on my feet.
The last several months of anxiety-ridden appointments and procedures has been a lot. In all ways worse than the brain tumor. And the muscle weakness just made my anxiety about falling worse.
If I have learned anything from the latest lung biopsy scare after the lymph node surgical biopsy following two lymph node needle biopsies sandwiched between episodes of anxiety, inflammation, and IBS flares, it’s to trust myself when I say it’s time for steroids.
It’s day three of my dose pack, and despite the excessive hanger and steroid insomnia, I feel human again. For the first time in almost two years.
In my adolescence, I used to get a steroid dose pack every year around May when Ohio River Valley pollen and GE Plastics pollution landed me at the doctor’s office with a raging sinus infection. It suppressed the inflammation and made the pain and pressure go away while the antibiotics took the time they needed.
Now doctors look at me like I’m begging for Vicodin and a Shetland pony when I ask for help getting inflammatory shit under control. “We don’t like to prescribe steroids. Only as a last resort.”
I. Have. Brain. Cancer. If I don’t qualify for a little pain relief, who the fuck does?
I’m not mad at my doctors. Just so frustrated that every little thing feels like a fight for me.
I don’t know when this “steroid steward” thing happened, or if it’s a regional phenomenon or what, but I miss palliative care so much. They’d call me once a month, and make my life as tolerable as possible. I need to find this kind of care here.
I understand better than most what risks come with steroid use. When I request it, I’m way beyond needing a little help. I’m desperate. I haven’t taken steroids since Boomer had a surgical liver biopsy in 2022 and I needed an assist walking across the University of Illinois campus while their veterinary building was under construction.
Did I mention I have a brain tumor and sometimes my body needs help?
This post is entirely self-serving. For the next time I need to be more assertive. I can be a bitch with or without ‘roid rage.
After my brain cancer diagnosis, I wrote a juicy memoir airing my ex-huband’s liar-stained laundry. I’m over the drama, but I might as well get something for my trouble, right?
He tried to gaslight me once about its contents, insinuating I was the liar or misremembering when I had intentionally obscured details.
When that didn’t get me to doubt myself, he promised to help me market my book. Yes, even after all the laughable Author Solutions drama he started.
When his offer to make me internet famous didn’t get me fawning over his generosity, I reached into my very effective Rodney repellent toolkit and blogged about him some more.
As if on cue, he scurried away from the truth like vampires running from daylight.
Who You Gonna Believe is “pretty good story telling,” he wrote via my contact form as I recovered from more chemo.
Anyway, it’s tiresome to promote this book because I am cancer weary and just generally not interested in book promotion. But money is tight after more health insurance shenanigans, so here I am. Asking you to tell a friend about it or read it if you haven’t yet.
(It’s free with ads. You don’t have to give up money to help me buy Dan’s meds this month.)
You can read the whole ebook—did I mention it’s free and infuriatingly funny?—on this website, right this very second.
Or you can subscribe to my Substack and get it delivered one chapter at a time, on the first of every month, to your email inbox.
Here’s an excerpt from Chapter 4: Liar, Liar:
I was born on March 4, 1980 at Gibson General Hospital with a fully functioning bullshit detector. I didn’t know how to use it, or even that I had one, until my mid-twenties though. Here’s how I discovered it:
One Tuesday circa 2006 or 2007 (I could probably pin down an exact date if I had the energy to dig, but I don’t) I was driving home from my part-time job at The Saturday Evening Post. Light from a Long John Silver’s sign reflected off the windshield of my Malibu and the AC vents pulled in hints of fried fish and seasoned salt. I was having some super serious dinner thoughts while waiting for the light to turn green when my cell phone started ringing. It was Rodney’s ringtone. I couldn’t dig it out of my bag. I was driving.
Well that was fast. I’m off the Plaquenil (hydroxychloroquine) for good. I’m so weak, dizzy, and bloated. I don’t think it’s the drug’s fault, honestly, but boy does it amplify my IBS pain and bloat by like a bajillion.
I can’t even. My abdomen is so tender to the touch. There isn’t room for these behemoth-like intestines.
I messaged my doctor who reminded me we didn’t even have confirmation that this (waves at myself from head to toe) is autoimmune. He agreed I should stop taking the Plaquenil.
Gah! It’s so frustrating not knowing how to fix this.
There are a couple of bright sides to this story, though. First, Dr. Rheumatologist called in a prescription for a steroid dose pack. Praise jeebus!
I’ve been trying not to beg—in case they were a terribly ill-advised treatment—but I’m desperate.
I don’t know what’s causing these additional symptoms, but I do know perfectly well my body needs a little assistance to even have a chance to repair what’s wrecked.
In the past, palliative care would give me a short course of ‘roids. However, I don’t have palliative care here in Edwardsville, which means quality of life often takes a backseat to diagnosis.
I get it and I respect it, but it does present some challenges for a woman 7 years out from a brain tumor diagnosis. Like hooray, I’m alive. But also? It’d be nice if I could, you know, get out of bed.
Second bright side: I feel so awful this evening that it’s clearer how much better I was doing eating smaller portions more frequently, meditating daily, and not having to fuck around with health insurance.
(Things went sideways with Dan’s Medicaid today, but I don’t feel like explaining in detail. Suffice it to say we had enough on our plates already. And that extra $60 we need for his meds now wasn’t exactly budgeted.)
Anyway, here’s hoping the steroids give my body the boost it needs. It’s been trying way too hard for way too long.
I’ve been thoroughly enjoying not having any doctor appointments to blog about this month, but the medical mystery of whether or not I have some kind of chemo-induced lupus still looms.
I started back on the Plaquenil (hydroxychloroquine) last night. I’m not feeling a hundred percent—more on that in a second—but I think things are good enough that I can track whether the medicine is going to be helpful.
Plus, when I stopped taking the Plaquenil, I told the nurse practitioner (and myself) that I would start up again when I felt better. My next appointment with rheumatology is at the end of October, so given how long this drug might need to take effect, It seems like a good idea to give it another try now rather than later.
I was feeling better after the anxiety work, and I started reintroducing some of my favorite foods to test my IBS. Though I haven’t endured my worst IBS-C ever the past couple of weeks, constipation has definitely moved back up the problematic scale to affect my overall quality of life.
Over the weekend I had a buffalo chicken pizza. It tasted glorious but had jalapenos on it. I removed the jalapenos originally when placing the online order but screwed up another part of the order, deleted the wrong pizza on accident, and then forgot to remove the peppers when I added my pizza back. (Honestly, the buffalo sauce was probably too much on its own.)
No big deal, right? Ha!
The inflammatory effects were immediate. I picked the jalapenos off subsequent slices, but the damage was done.
Not that one single misstep undid me. The weather was unstable. I was already feeling worse, which kicked off a series of “eat this to distract yourself from the pain” cues in my brain. I knew what was happening, but my lizard brain wasn’t interested in the pedantic warnings of my prefrontal cortex.
At least I understand the process of the habit now, thanks to Unwinding Anxiety.
Anyway, it’s pumpkin spice latte season, so I was off my sleep game too, consuming caffeine like it doesn’t keep me on the edge of awake all night.
Upon hearing yesterday’s news about the assassination attempt at Mar-a-Lago, my first thought was “OK, sure” as I rolled my eyes like Robert Downey Jr.
The thing about lying more frequently than you breathe is that people who might be inclined to empathize with your situation under normal circumstances don’t trust anything anymore.
They might even wonder if you planted an assassin-type guy in your golf course bushes for a quick pity fu…ndraise and to get your mug on screen again.
I doubt the authenticity of the assassin story the same way I doubted Rodney when he told me he went to the gym.
The consequences of being unbelievable are monumental, if you possess the self-awareness to understand what you’ve done. If you don’t, you’re destined to believe you’re eternally the victim.
Liars can say something like, “I was working out” and I doubt them. Others have a story of martyrdom in the news cycle, and I’m like, “How much did his grievance-rich goons donate this time?”
Am I victim-blaming by initially thinking the wannabe marty wanted to be a martyr again? Or am I calling it like I see it?
I went through my own lying phase in my teens. It had the effect of making me unbelievable as well as ensuring I hated myself. Eventually the guilt and shame became too much for me. I accepted the reasons I was lying to myself and others and vowed to do better.
So when I see grown-ass adults lie compulsively into their late seventies, I assume they experienced similar inner turmoil at some point and decided lying to themselves and everyone they encountered was definitely the way to go.
I am repulsed by that choice, by the way.
Maybe I’m wrong or missing something, but I’m incapable of seeing compulsive liars any other way—at least until someone who knows more about human psychology explains it to me. (I like to think I’m capable of accepting new information and changing my mind.)
Anyway even if I’m wrong about the context, he just has to get over it. What’s a little gun violence among Americans?
I don’t pretend to be able to wipe out racism and xenophobia in my social circles, but I can call it out.
On August 20, 2024, Michelle Obama gave a fantastic speech at night two of the Democratic Convention. In it she said many poignant things, but the quotes I’m thinking about today are, “We know folks are going to do everything they can to distort [Kamala Harris’s] truth” and “for years, [Donald Trump] tried to get people to fear [Barack and me].” Those words sparked my memory.
***
I remember when the morally devoid pundits among us attacked First Lady Michelle Obama for wearing sleeveless clothing at the White House.
And I remember how they didn’t mutter a similar word of disapproval when Melania did the same damn thing.
I remember how when Trump won the Electoral College in 2016 (and only the Electoral College, I feel duty bound to remind the world) they delighted that Melania was going to “make the White House classy again.”
The reason I remember those things so clearly is because members of my extended family said them or shared them on Facebook. I was disgusted, ashamed, and appalled by the double standard and obvious racism then. But I was naive, even though I thought that impossible at my advanced age.
I understand now that racism isn’t obvious to everyone. I don’t have the will or the energy to discern what’s in every person’s heart, but I saw something today shared by a newer member of my extended family that was so viley racist and xenophobic, I can’t get it off my mind.
Like Laura Loomer’s disgusting remarks, the intent was so grossIy obvious I think even Marjorie Taylor Greene would call it out.
Which has me asking myself if I can stay silent.
I cannot.
I think some people are so isolated from others’ perspectives they don’t know when something is racist, and it’s up to others to state it for the record.
It’s hard to assign ignorance to the family member who posted the meme when malice seems to be his modus operandi, but it is entirely possible that someone I love saw it and laughed quietly in ignorance without fully comprehending the depravity of its presumptions.
So in the hopes a single witness to that “joke” is still reachable, I have to say: it is racist and xenophobic to suggest a group of people are committing crimes simply because they’re from somewhere you are not.
If racism is what you choose, that’s your burden. But know that racism and xenophobia will not be welcome or tolerated here. Ever.
I watched the presidential debate last night between Kamala Harris and Donald Trump, and I was not sorry. I had some reservations about exposing myself to Trump’s lies again, what with my anxiety.
But Harris’s oft-repeated line that she “knows Donald Trump’s type” was never more evident to me. She eviscerated his fragile strong-man persona without breaking a sweat.
As a rule, I think it’s a bad idea to gush over politicians. I think debates as we know them are entertaining but largely unhelpful. I think it’s immoral to let Donald Trump spew lies into a camera.
But last night I set all of that aside and basked in the public display of someone with actual authority plainly saying what needed to be said to a huge audience.
Harris provoked Trump at every turn by masterfully inviting him to repeat his favorite lies, but when she baited him with crowd size and reminded him that people left his rallies early?
That’s when I personally knew it was time to stick a fork in him. His meltdown was proportionate to his ego, and his narcissistic rage was in full swing.
When he repeated the lie about people stealing and eating pets in Ohio, I gasped and pictured his debate team throwing up into buckets as they watched in horrified anguish behind the scenes.
When Trump (who also thought WWE drama was real) argued with the moderator that the pet eating story was true because he had seen it on TV, I lifted my jaw off the floor and briefly felt embarrassed for him.
Then I remembered how I used to feel knowing (my now ex-husband) Rodney would be despised on his birthday and at Christmas. I had to remind myself I was projecting my own humanity onto a person who had chosen hate, chosen loneliness, chosen estrangement.
No one cared enough to come get Orange Pop Pop because he has prioritized his ego at the expense of everyone else decade after decade.
No one was there last night to keep Trump from desperately wandering into the spin room when the debate was over. It was one of the saddest displays of self-aggrandizing impotence I have ever witnessed, but it was absolutely avoidable.
Before cancer, I held a couple of jobs where I was praised endlessly. To this day, I believe I came off looking so great to my coworkers because I was being compared to my objectively horrible predecessors. A juxtaposition like that might be going on here too. I mean, Harris has now been endorsed by Taylor SwiftandDick Cheney.
Anyway, I’m going to practice some fancy breathing and eat some pumpkin roll while I enjoy this morning’s debate commentary and scour the internet for presidential debate memes.
