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.
I was going to write a post on New Year’s Day, but, well, ouch. If the weather won’t make up its mind, I’m inevitably in pain until my body adjusts. Not that my body has adjusted to any of this back-and-forth, up-and-down, precipitating-but-not chaos. I’m typing out of spite.
I’m grumpy today. I just woke up, and I am not a morning person. My amazingly comfortable bed isn’t comfortable anymore. I could go on, but I don’t feel like it.
Let’s do this in chronological order. As of last week, the house in Urbana is sold, and I only have a few bills to pay off before there’s nothing nagging at me there. The closing check came, and now I’m waiting for my bank to let me have the money I deposited so I can pay those debts and hand a check over to Mom.
I thought I’d get to stop thinking about money, but I guess that only comes with death. Something to look forward to maybe. (I’m in a mood. If you don’t appreciate morbid humor yet, I highly recommend getting brain cancer in your mid 30s.)
Anyway…
After the closing came my NYE MRI in a mobile unit in the back parking lot of St. Elizabeth’s Hospital. My first (and worst MRI) was in a mobile unit too. In Danville that time. This time there was no music to strain to hear over the magnetic screeching, and somehow the time passed quickly.
Do songs make the scan feel longer?
The longest (perceived) part of the MRI was the part a little over halfway through where the rad tech tried to get my IV going for the contrast dye. My veins weren’t exactly cooperative.
My results are back on that MRI already, but the radiologist’s report was noncommittal because the previous MRI wasn’t available for comparison. So basically it just says, “Hi. You still have a tumor on you brain stem.” Which literally everyone already knew.
Don’t worry, it wasn’t all for naught. I still had to deep-breathe my way through reading the report, because: PTSD. I went to bed at 11:30 on December 31, 2022.
Next on the timeline was New Year’s Day. We ate cheese and crackers. I was planning on writing a blog post and doing a Zentangle video to start 2023, but I didn’t get around to either. Didn’t feel like it. My clothes are tight and cutting into me even though my weight hasn’t changed. My ears are ringing and everything hurts. But I can’t do anything about the weather, so…
Dan and I just recently wrapped up another rewatch of all seven seasons of The West Wing. Then I listened to Rachel Maddow’s Ultra podcast. (It’s good and less than 10 episodes.) I found the podcast gave me a little hope that maybe we aren’t doomed, and The West Wing had me like “this pie-in-the-sky crap no longer holds up.”
I mean, we all know the Chief of Staff wouldn’t just testify because Congress subpoenaed him.
Looking at you Mark Fucking Meadows.
Another very party-over-country thing is happening now: Republicans are turning the House into the same shitshow of do-nothingness the Senate was when they had the majority there. And, you know, the more I watch this ass-hattery unfold, the less frustrated I am with Republican politicians and the more frustrated I get with people who are still voting for these absolutely daft, self-serving, nihilist turds.
Conservative congress members say that government doesn’t work. Then they break it for shits and giggles and take home $174k a year.
Don’t get me wrong, I had a good belly laugh at Kevin McCarthy’s expense the first six times he lost to the likes of the Freedom caucus.
Coup-cus?
But now it just looks like the Republicans are quiet quitting in front of the C-SPAN cameras. Self-cancelling culture and infighting within the party of personal responsibility. No one wants to work anymore. Am I right?
Let’s start with the big news: I have a new primary doctor. More importantly, I like her. Which, if you’ve been reading here a while, you know isn’t an insignificant thing. I was a little daunted thinking about this task just after we moved here, but I put what I’ve learned as a professional patient to good use in selecting a primary care physician (PCP).
Basically, there are four things I look at now when I’m hunting for a new doctor here in the US:
DO over MD: There’s just something more humane about the way I’ve been treated by DOs. I’m not saying that all MDs are terrible and myopic—far from it. But I’ve never been treated like crap by a DO yet. So I figure why mess with what works.
Woman: It has historically been helpful for me to receive care from women. I’m not saying that all male doctors are terrible either, but my experience has been telling. Percentage-wise? Dudes are way more likely to be arrogant jerks. And arrogance gets in the way of my getting good care. Arrogance literally traumatized me. Not letting that happen again if I can help it.
Insurance: I’m on Medicare due to disability, and not every doctor wants to deal with that. I always check before I schedule.
Ratings and Reviews: Most doctors these days have been rated by patients, either on Google or Healthgrades or, you know, somewhere. I read those reviews. All of them. (Coincidentally, I just received an email this morning telling me people found my review of Dr. Lee Hartner helpful. Suck an egg, Hartner. You absolute ass.
So yesterday’s encounter went really well because one of the things my new doctor said was something like, “I don’t know a whole lot about brain cancer.”
Music to my ears, kids. I immediately knew I was in the right place when she said that. Doctors who admit they don’t know everything are magical. Like unicorns. I told her that was good, and maybe we’d both learn something.
“Also,” I said, “I have, uh, some trauma from a doctor who thought he knew everything and I knew nothing. So my brain tumor was mis- or undiagnosed for a couple of years. I’m going to be a little anxious every time I’m here.” My voice got a little quivery and I could feel a few tears bubbling. I was tired and trying to stifle the medical PTSD episode that wanted desperately to be let out and recognized. I didn’t cry, but I came really close.
Anyway, I told her about my extreme sensitivity to meds, how doctors always want to prescribe me medicine by weight and it always ends badly for me and she said something like, “I get it. I’m the same way.”
So I found a new primary doctor in one try. That’s nothing short of amazing.
