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.
I’m going to preface this post on Medicaid Cuts by saying this: if you don’t get it, that’s not my problem. I don’t have the energy to help you understand why this matters on a larger, political scale. If you offer me worthless advice in the comments, I will reply with merciless snark.
Dan was kicked off Medicaid after 6 years. His current health insurance ends at the end of the month. All because I make $200 more per month than is allowed under new rules.
The rules don’t care that the annual price of one of his prescriptions is more than I make the whole year—far exceeding the “extra” $2,400 a year the metric says I make now. Or that the Patreon and YouTube income I report are not guaranteed. Or that I can’t afford my medical bills even with those supplemental sources. Or that Dan gets paid nothing to be my rock.
The rules do, however, mandate that we can’t save money for when something like this inevitably happens.
Making anyone deal with these things when there are other options is inhumane. Making the sick and disabled navigate this hellscape—repeatedly—is supervillain levels of evil. Even convicted sadistic fuckwads would think twice about doing this to other humans.
For me to get any kind of better or merely acclimate to symptoms of my relatively new and undiagnosed health problems, I require stability.
Today, Super Bowl Sunday, I didn’t get much of anything done. I was awake until 4:00 a.m. and spent a nice chunk of my afternoon napping. Yesterday, though, that’s when I switched a few list items from To-Do to Done-Did. I:
Transferred a balance I was carrying on one credit card to another with a lower interest rate.
Ordered a camera mount that works with my new set up at the new place.
Researched getting a monitor riser for attaching the camera mount clamp to my desk. (I ultimately decided to hold off and try something homemade—a.k.a. cheap—first.)
Fixed my email configuration so that I can send from my emilysuess.com addy again.
Ordered Project Pack 20 from Zentangle HQ. The videos from HQ won’t be out until next month, but I had the money now. (If you know, you know.)
Did some extremely light exercise because my cholesterol results are in, and yikes! y’all.
Washed AND folded a load of laundry.
I have a tendency to downplay my accomplishments by comparing what I can do now with what I could do before brain cancer. That’s not really fair. So I’m going to stop that nonsense and remember that I can still do things, still live.
And just like everything else, I’ll remember better if I write, or type, it out here.
For instance, the other morning I was scooping poop out of the litter box like it was nothing. And I stopped for a second after flushing the toilet and thought to myself, “Holy crap! (Ha!) Three months ago getting this done was an ordeal. Now it’s just part of my day!”
I’m getting a little better at climbing stairs too. I still hold the railing with both hands and yank myself upwards like I’m practicing for a tug-of-war tournament. But the more I get the long-term effects of chemo out of my system, the more I will be able to do—and the better I will be able to do it.
Fatigue and pain are my two biggest complaints and they are so closely connected, it’s hard to know what, if anything, will help. Well, after a little more time off methylphenidate, I’m feeling like my pain is still lessening.
Tomorrow the housekeeping crew is coming, and I am freaking thrilled. I told Dan and my mom that I would bake something on those days (every other Monday) because the kitchen counters will be distraction-free. I need the clarity to follow written instructions. If there’s a fork on the counter, it’s like turning the lights off at a night baseball game in my brain.
Turns out having brain cells irradiated and taking chemo that knows its way past the blood-brain barrier can lead to executive dysfunction. Go figure!
I hesitate to say today was OK, because what counts as OK for me requires a lot of expectation management on the part of everyone else. But you know what? That’s not my problem. I don’t know why I continue to feel like I need to be understood by people. It’s definitely a fault of mine, because even the people I interact with IRL daily don’t—can’t—know what it’s like to be me.
So I’m letting that shit go. Think whatever you want about me living my life with brain cancer; it’s not my job to make sure your estimation of my disability is accurate. That’s a habit I picked up from back in the day when Lincoln Financial Group was pretending I was in remission. And fuck them all the way to Jupiter. Gaslighting motherfuckers.
I’m not mad right now. I just really don’t like people who are willing to work for them.
Today was OK for me because I feel somewhat accomplished. First thing this morning, Dan and I had our labs done together. And both of us had to remember to fast, so that’s kind of a big deal. Also? One stick! Welcome back from the brink of chemo hell, junky veins!
For lunch, I made some pizza rolls in the air fryer—ALL BY MYSELF. And then I took a shower.
Getting all of this done in a single day (and then blogging about it) is freaking huge. Huge!
Mom is helping me get some pictures of Dan and his family framed, so we went through some boxes of old photos. I might be slightly biased, but Dan was one of the cutest triangle-mouthed babies to ever exist. Here he is at 6 months with his twin brother.
There are more pictures to come, but not in this blog post. Happy Thursday, y’all.
Judging by the intensity of my cravings today, I’m running headlong into another mig— By the way, are you going to eat that last brownie?
(Some have hypothesized that cravings are part of prodrome, not a trigger for migraine headaches. And, you know, let’s just go with that because I’m not about to blame myself for lacking self control when it comes to that pan of brownies in the kitchen.)
So I figured I should do a quick rundown of what’s happening before I feel even less like writing an update. There’s some pretty migraine-ish weather in the forecast, so, hatched egg or not, I’m counting this damn chicken.
Most of the time between my last post and now was terrible, truth be told. The only things fueling me were sensory overload and PTSD. I wasn’t even aware of my sorry condition until things relented and suddenly my internal dialogue went from “everything hurts and I’m dying” to “still not dead, assholes!”
A few things helped break the spell: Someone on staff at my oncologist’s office said the word “stable” to me on Tuesday, I have hired cleaning help for the first time ever, and I am listening to music again.
Although they’re still awaiting an official July 2022 image comparison from a radiologist at St. Elizabeth’s, the written reports don’t indicate any significant changes in my brain tumor. That means I can continue not taking Temodar for the immediate future, and sweet cheezus is that ever a relief. I’ll have another MRI in a few months as they continue to monitor stuff.
Lather. Rinse. Repeat.
Mom helped me set up an estimate with a local housekeeper, and she and another member of her crew came out for the first time this week. When I saw the place after, Dan and I kept swapping excited relief.
“They got the fingerprints off the microwave!”
“They vacuumed the cat scratcher!”
“They made Boomer’s bed!”
“Holy shit, they cleaned Boomer’s nose prints off the patio door!”
I have been trying not to drown for almost a decade now. I can no longer fathom how much two abled people can accomplish in an hour. If I didn’t have vague memories of life before cancer, I’d call what happened Tuesday a blessed miracle right up there with virgin birth and tumor-less MRIs.
During a meltdown a few days ago, I bought a cheap pair of headphones from Amazon. (Although I have a set of gamer cans that work fine, they’re too heavy to put on when stuff hurts.) And I told myself I wasn’t going to do anything but listen to music until my crisis time passed.
Coincidentally, if “Remember Us This Way” had been my first audio encounter instead of “Poker Face”, I’d have been a Lady Gaga fan ages ago.
Anyway, I spent days with my headphones on listening to everything from Fleetwood Mac to The Mavericks. (I don’t know Spanish, but en Español—this track in particular—is wonderful.) I hadn’t done so much music listening since my divorce, because I thought sounds hurt me post brain surgery. It turns out, however, my problem is with multiple senses and overstimulation. If I close my eyes and lie prone, I can listen without wanting to stab everything around me.
In summation, I’m okay but bracing for some intensified pain. Send Kinder Buenos.