Let’s start with the good news that isn’t about coffee and cake. (We’ll get to that though.) I woke up before noon today—10:00 am! I’ve been having a hard time falling asleep this week. I mostly blame the weather, but there are other factors. Thing is, I don’t feel like listing them and I don’t think you really want to read them.
Despite feeling tired and a little groggy, I’ve already contacted the folks at Black Stag Coffee about their iced latte product. I like them a lot better than bottled Starbucks, but they do present a problem for me. The seals around the neck aren’t perforated.
So I requested they start perforating them because my hands are so useless in the morning. If they were easier to open, maybe I would swear less in the mornings. Maybe.
Coincidentally, the beverage company is located in Neenah, WI. And the only reason that means anything to me is that I remember walking in downtown Indy with Dan years ago. He pointed out the manhole covers were stamped Neenah, WI. Made at the foundry there.
Anyhoo. I’ve basically written off this week. The weather is all over the place. Though yesterday was nice, there’s been wind, rain, and temperature changes that make my nerves do that whole inflame-y thing where I feel like my own muscles are choking me out. Not. Fun.
So I didn’t get a Zentangle video made this week, but I’m not sweating it. Warmer, stabler weather is coming. And soon I’ll be complaining about how freaking hot it is.
This Saturday is my 43rd birthday! (My Amazon wishlist is here, but I don’t need anything on it. It feels good to say that.)
I have requested French toast sticks for breakfast Saturday morning. And I’m going to try to make my own applesauce cake.
It’s a recipe that comes from my paternal grandma. We used to have it when I was little, and I think my recent bent toward nostalgia has made me crave it.
Since we’re talking bout food, Mom was in Fairview Heights and got us a meal from this place called Lotawata Creek for my birthday dinner. A little early, but there was so much food and it was so delicious. I will probably still be snacking on leftovers until I’m 43.
We pass this restaurant on the way to and from my new oncologist so, this could become problematic. My willpower is much lower than my cholesterol.
March is also the month my Dad died. I think that has something to do with the nostalgic sort of melancholy I’ve been feeling recently too. Later this month will be the two-year anniversary of his death. I still think about him every day.
I’ve decided that old saw about the pain lessening over time is a misperception. Kind of true but also inaccurate. It still hurts to think that he’s gone, but I think more about when he was here than how much I miss him now. I’m sure that must make perfect sense.
A couple times a week, I still say out loud, “I miss you, Dad.” Not because I think I’m talking to him. But because some things feel better on the outside of me than bottled up on the inside.
This isn’t meant to be a heavy post though. I’m going to wash down my morning meds with this Black Stag coffee Dan opened for me. Eat a banana. Maybe play some Fallout 4 until my body protests too much to concentrate. Type at y’all later.
One of the ways I can tell I’m feeling better is that I am getting things done again. That includes posting a new Zentangle video that went live this morning. Also I’m already thinking about new ones to create. Signs of life.
My hands are unsteady and my grip feels weird, but I did it. Taking a few minutes to watch this helps my channel, especially after a long hiatus like I took following my dad’s death and then doing more chemo a few months later. So, if you like Zentangles or just want to help a girl out, here you go:
These are actually the first nine patterns in the Project Pack 10, L5 spread. Sometimes what I need to do is go back to the basics. Anyway, if you’d like to take a look at the original videos from Zentangle HQ, you can find them here: Zentangle YouTube Channel.
I plan to film Part 2 soon, but I have to make sure I take some time off to take care of me and ordinary life things, and that requires being very intentional about how I spend my time. So check back here or subscribe to my YouTube channel if you want to know when the next video drops.
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.
