It’s tempting to apologize for not being around here, or my YouTube channel, much lately. But then I remember I have a brain tumor and that my inability to adhere to my old able-bodied production schedule is never, ever coming back. I don’t like it, but I’m not really sorry about it.
So long time no write? I guess? Happy to be back.
To summarize what I didn’t cover in real time the last six weeks or so:
- I had a follow-up diagnostic mammogram that didn’t show anything of immediate concern but looked just sketchy enough that I have to go back every six months instead of 12. I find this extremely annoying. I’ve been totally over medical appointments for 3 years now.
- I completed three rounds of therapy (by phone due to Covid-19) and … the jury is still out on whether it’s working for me. The therapist is great, but therapy forces me inward where I sometimes dwell on stuff that makes the depression and anxiety kind of, well, worse. I’m not saying I’m done, but I’d be lying if I said I hadn’t contemplated canceling the future appointments I have on the books. Sometimes avoidance is running away, and sometimes avoidance is coping. I’m trying to suss out which one I’m doing before I quit.
- My parents stopped by just before the 4th, and we had breakfast together out on the patio sans hugs and stuff. It was good to see them, but also sad that it couldn’t just be a normal visit. I do enough venting about coronavirus and the failures we need to own as a nation on Twitter and Facebook, I’m not going to add more here. But I’m not avoiding getting political right now so people will like me. I don’t care who likes me. Especially not right now.
- This past week I had a killer migraine. Surprisingly, it had been 8 or 9 months since the last Big One. Big Ones are migraines that come with like 3-5 days of prodrome, 2-6 hours of aura, and then 36 hours of full-on migraine attack where ice-pick pain causes my shoulders to tense up so bad I end up with a pinched nerve. Fun times. I’m winding down postdrome currently and hoping that writing a quick blog post will help me dig out of the mental fog. I’m still in that fuzzy spot where the fatigue and disorientation make it hard to word. (That is not a typo.)
- This is the part where I’d probably plug my YouTube channel and talk about all the Zentangle videos I posted, but—SURPRISE!—I haven’t been able to work on those either. It started out being a motivational problem and then quickly turned into “I. LITERALLY. CAN. NOT.” I will get back to it one day, but I’m not currently making plans for practical reasons.
- I did manage to get a new Chapter of Who You Gonna Believe posted on Sunday. Yes, technically it was slated for June 30, but *points to everything I just wrote.* Chapter 16 isn’t completely Rodney-free, but it does end with me firmly planted in the Era of Dan. A much happier, lovelier time. It almost feels a little sappy to me, but maybe that’s just inevitable because everything that preceded it was my personal hell.
Anywho, if you want to read WYGB, all you gotta do is sign up to be my patron at patreon.com/EmilySuess.
I went through MRI #18 on Monday. It was a regularly scheduled follow-up on my brain tumor. I have MRIs about every four months until further notice. To overly simplify possible outcomes of my MRIs, things can basically go one of two ways: “continue waiting and watching” or “commence panicking.” I already have the results of scan #18, and they are “continue waiting and watching.”
Which, in the world of brain tumors, is something to celebrate because it beats the alternative.
Being that the MRI took place in the time of masks and coronavirus, it was a little weird for me. And by weird I mean it was weirder than usual.
I knew going in that I’d be doing the whole thing alone. Usually Dan, my emotional support human, accompanies me on these things and hangs with me in the waiting room until they call my name. But with the precarious state of things and his being on immune-suppressing drugs for Psoriatic Arthritis, there was no question—he would drop me off and never go inside the hospital.
For psychological reasons, it’s hard for me going into hospitals alone. But it’s also physically challenging for me, scooting through the halls that all look the same with my rollator and my vertigo in tow. Because, even though I do this sort of thing regularly, getting where I need to go is different every time. If some new hospital construction project doesn’t force a detour, then visitor tracking during a pandemic does.
So before my noon drop-off, I read the arrival instructions on my appointment reminder at least a dozen times, trying to memorize my route: Outpatient entrance, turn left, cloud elevators, LL, head north toward the hospital.
I’m not directionally challenged, but if you turn me around inside an unfamiliar building, drop me in a hallway without windows, and swap right/left directions for compass directions, I’m going to struggle. Hell, I would struggle even sans brain cancer and post-traumatic stress. That’s why I was like 95% certain I was going to get lost if I just walked in the hospital winging it. I’d practically convinced myself that if I didn’t memorize the arrival instructions, I’d be trapped in the hospital basement for hours, possibly days.
Ah, memorization. I used to be really good at it. I think it’s why I always did so well on exams in school. But brains are fickle, it turns out. They don’t perform as well after they’ve been poked with a scalpel, irradiated for five and a half weeks, and repeatedly, methodically exposed to life-saving toxins.
As the doctor at my neuro-psych evaluation last year told me, though, I don’t have a memory problem per se, I have a problem with recall. By which she meant that the information I want is in my brain, but I struggle to access it in a timely fashion.
I still just tell people my memory sucks though. Because, practically speaking, what’s the difference?
There are tricks I use to cope, though they’re far from foolproof. One of them is to create lists. Another is to just repeat shit until my neurons make so many visits to a particular information storage area that they create a new noodle groove.
DISCLAIMER: This is not a scientifically accurate description of any neurological process.
What was I even writing about? Oh! So Dan dropped me off in the circle drive and I tried to scoot my way through the automatic doors of the outpatient entrance to Carle Hospital. They didn’t open. There was an easel-like sign on the ground about three feet in front of the doors telling me to use the main entrance, but I trucked right by it for three reasons: 1.) when I look down my nystagmus kicks into overdrive and the whole world spins in front of me, 2.) my brain was preoccupied with remembering to make a left once inside, and 3.) the other of my only two functional processing slots was busy trying to keep me from kissing concrete.
So I searched the glass for a sign taped to the door. I’m sure with an expression of complete bewilderment. I found one to the left, just above a little black rectangle with a red light on it. “Employees must use keycard to enter.”
I was in the middle of muttering “but what does that mean for patients?” when the automatic doors slid open and a security guard in an N95 told me I had to go to the main entrance. Everyone was to be screened before entering.
So much for those stupid directions and the mental pathway I’d spent 20 minutes creating.
I would like to note that I am not complaining about the hospital’s COVID-19 protocol. I am thankful for it. What I am complaining about is how deeply I grieve what I’ve lost, how I miss the ability to pivot when thwarted by uncontrollable circumstances and then carry on without missing a beat. After a pause to process what I’d been told, I thanked the masked man and shuffled to the main entrance.
I did make my way to the radiology check-in without much problem. The signs on hallway walls that were either non-existent or covered by plastic sheeting during remodeling in January were back and at eye-level, meaning I could read them with minimal dizziness.
I was the only person in the waiting room to get my IV for the contrast dye, and the creepy quietness of the hospital was unsettling.
Inside the imaging room, I climbed aboard the skinny table, stuffed a couple of plugs in my earholes (these aren’t the fancy MRIs like at Siteman Cancer Center with the posh headphones and your choice of internet radio station) and did my best corpse pose while a stabilizing headpiece pinned me in place and the magnets did their buzzing and screeching at 110 decibels.
I was going to write about this excursion days ago. I was also going to make rice pudding and post another YouTube video and, you know, just generally do things. But it’s taken me this long to recover from the exhaustion of MRI day. I’ll get back to creating things again when the fog lifts. Until then, remember:
May is Brain Tumor Awareness Month, and you can make a donation to the National Brain Tumor Society to help fund research for a cure.
Hello, everyone! In lieu of my typical written post today, I’d like to share a video with you. A couple of weeks ago, Rudy Fischmann of Brain Cancer Diaries and I chatted about what it’s like to live with a brain stem tumor for his vlog series.
We talked a little about my road to diagnosis, the hassles of insurance, and also about the things that keep us going and help us get over the hurdles that brain cancer has put in our way.
Take a few minutes to browse the other episodes on the Brain Cancer Diaries YouTube channel — there’s a ton of great stuff there. Rudy interviews other cancer patients (not just brain cancer patients) and gives you an inside look. If you live with cancer too, I promise you’ll find some comfort in the shared experiences of Rudy and his guests. And if you don’t live with cancer, you’ll gain an appreciation for all the ways the Big C changes a person’s life — for good and bad. Perhaps you’ll even be better equipped to support your friends and family staring down their diagnoses.
Anyway, I am in awe of the fantastic, creative job Rudy does editing his videos, and this one is no exception. The amount of time and energy that must go into the content he creates for the world! Support him and his channel by liking, following, and subscribing to Brain Cancer diaries on YouTube and Instagram. It’ll make you a better person.
First of all, how are you? How are things going for you out there? I’m honestly starting to settle into the acceptance phase of this whole thing. Of course I don’t prefer quarantine life, but it hasn’t felt like an outright assault on my mental health the last for 48 hours or so. So, you know, I’ll freaking take it!
What has helped me most this past week is spending less time on Twitter. Reactions to Trump’s daily briefings combined with reactions to his toilet tweets, were really wearing me down. Don’t get me wrong, all the outrage is entirely justified. I just desperately needed to limit my exposure to them.
It’s like limiting my sun exposure. Sure, I need my body to make vitamin D, but that doesn’t mean I should be exposing myself to direct sun for hours a day. Right?
Right. So here’s a photo essay on some of the stuff that’s been making me feel almost human the last week or so:
I’m still uploading new videos on my channel. Most recently working with supplies from Project Pack No. 8. I really enjoyed drawing the black Zendala tile with the brightly colored Gelly Roll pens. It’s so satisfying to me to see the ink roll over the page that I’ve watched my own video at least a half dozen times. Don’t judge me!
Coloring Page for Patrons
I’m really proud of this! You might recall that at the beginning of the year, I listed making a coloring page as one of my goals for 2020. Well, I did it! I scanned a full-page Zentangle doodle from my notebook, scanned it, and used it traced the pattern using Krita so I could remove the dot grid and clean up the lines for coloring. It’s now a download for my Patrons. I also posted short videos of the process to my Facebook and Instagram. Go me!
More Cooking and Baking
I promised in an earlier post that I’d tell you about the Dreamsicle flavored froyo recipe. It’s so simple. Three cups of plain homemade yogurt, 1/2 cup milk, 1/2 cup sugar, 2 tablespoons of orange juice, and 1 teaspoon of vanilla. Then you just churn it in your ice cream maker (I used my handy KitchenAid ice cream attachment) until it’s the consistency of soft serve. So. Much. Yum!
The banana bread is from a cookbook my mom sold as a fundraiser in high school. The book isn’t dated, but she guesstimates it is about 54 years old. This is the recipe we always used when I helped my mom bake as a kid. It’s my favorite for that simple reason alone.
Chicken Broccoli Cheese Casserole
And then there’s this chicken casserole, a recipe that came from the church potlucks of my youth. It’s chicken pieces and frozen broccoli cuts covered in a simple cheese sauce, then topped with Stove Top stuffing and baked and until everything it’s all bubbly and warm. Ah, casseroles. They aren’t fancy, but sometimes they are the only thing that will do.
Cutting My Own Hair
Yep. I really did. My mom was supposed to give me a cut, but it got delayed by coronavirus. And let me tell you, I absolutely cannot stand to grow my hair out. Not only is it impossible for me to deal with from a practical standpoint, but it also sets off the already waaaaay oversensitive nerves in my neck and shoulders post-brain surgery. So, while I’d love to have my old hair back, I have accepted that it will never happen. I have made my peace with it and I have embraced the clippers and an edgy undercut.
I promise this isn’t going to turn into a food blog. Not because I don’t like food blogs, but because if I blogged as frequently as I cooked, this site would only be updated a few times a year. I enjoy cooking. I enjoy baking even more. But I don’t have enough energy to cook frequently, let alone blog about it afterward.
Quarantine has changed our food routines for a few reasons, though. But that’s not what I want to blog about right now. What I want to tell you about today is my friend Jen, her wonderful blog, and her Piquante Chicken Corn Chowder recipe. This soup is sooooooo good. I had been meaning to try making it since she first posted the recipe back in January. (So naturally I didn’t get to it until three months later!)
Today was a great day for soup. After a couple of days with warmer-than-spring-like temperatures, a storm rolled into Urbana yesterday evening. When the winds subsided and the stormed pushed eastward, it had taken about forty degrees with it. Today was cold and windy, and my prematurely aged body wasted no time developing all the aches and pains. Nothing sounded better for dinner tonight than a warm bowl of soup.
There were some things I didn’t have on hand, grocery shopping being what it is these days—creamed corn, a magnum pepper, or a carton of chicken stock. So I left out the creamed corn, swapped the magnum pepper for a can of green chiles I had in the pantry, and melted a bunch of turkey stock cubes, which had been waiting in the freezer for their moment to shine, in place of the chicken stock.
And that’s what I love about soup. Use what you’ve got; you can’t really screw it up. It was delicious, and there is plenty left over so that we’ve got another no-fuss meal or two waiting in the wings.
When Jen and her husband Darren made the long trek from Winnipeg to Key West in February, they made a special stop in Urbana just to see us! We did a little catching up at Bob Evans and then posed outside for this selfie, which I freaking LOVE. Darren says it looks like an album cover for our new indie band: Steak, Eggs & Balls.
LMAO! So it does.
Anyway, that was the last opportunity I had to meet up with anyone that wasn’t a doctor or a mammogram tech before the Qua-rona-tine hit. And I am so grateful we had the opportunity. If you have a chance, check out Jen’s website and give her a subscribe. She is, as they say, good people. And we could all stand to hear from more good people these days.
Yogurt, like a lot of things these days, has been hard for me to find. So since we own an Instant Pot electric pressure cooker with a “yogurt” button and also find ourselves with quite a bit of time on our hands these days, I thought I’d learn how to make Instant Pot yogurt my own dang self.
This is not a food blog, and I did not anticipate a yogurt-making success story on my first try. So please forgive the quality of my picture. What you are looking at is five hot and sour soup containers from our favorite Chinese place filled with homemade yogurt. This amount of yogurt cost me roughly $1.83 to make — $1.52 for the half gallon of store brand milk and about $.31 for the store brand yogurt cup (the last remaining in my fridge from a low-fat vanilla 4-pack.)
I know, right?
Turns out, it was really, really easy to make. Yes, it takes all day, but it’s almost entirely passive. You don’t have to fuss with anything. The Instant Pot does all the work. The recipe below includes modifications I made to this recipe. It was so helpful and explained everything very well. I would have followed it to the letter had I possessed freeze-dried starter, but this is America in the middle of a pandemic. So I said, “Screw, it. Let’s see what happens if I use this.”
Homemade Instant Pot Yogurt
- Half gallon whole milk
- 6 oz. low-fat vanilla yogurt
1. Boil the milk in your Instant Pot. Pour the milk into the Instant Pot and close the lid. Press the YOGURT button and adjust until the digital readout says “boil.” The Instant Pot will beep when it’s finished. It takes about half an hour. Remove the lid and repeat these steps, boiling the milk with the lid off for another 5 minutes to reduce.
2. Cool the milk. Turn the Instant Pot off and remove the insert of hot milk. Put the insert in an ice water bath and stir the milk slowly to cool it evenly. (This should also prevent any film from forming on the milk’s surface, but if one forms simply remove it.) Using a thermometer to measure, cool the yogurt until it reaches 116°F.
3. Temper the store-bought yogurt, which serves as your starter. Put the store-bought yogurt in bowl and add about 1/2 cup of the warm milk. Whisk until smooth, then add the starter mixture to the rest of the warm milk and whisk until combined.
4. Incubate the yogurt. Put the insert back in the Instant Pot, secure the lid, and press YOGURT. Set the time for 8:00 (8 hours). Walk away.
5. Check your yogurt. Your yogurt is set when jiggles. (The original instructions said incubation could take anywhere from 4 to 12 hours. But 8 hours was right on the button for me.) A thin, clear liquid layer of whey will be visible on top.
6. Cool your yogurt to room temperature without stirring. Remove the insert and place a tea towel over the top to cool.
7. Chill yogurt overnight. Remove the tea towel and cover the insert with plastic wrap. Chill for at least 6 hours.
8. Store your yogurt. Whisk the chilled yogurt just until smooth to remove any lumps. Store in the refrigerator in airtight containers.
My Personal Notes
I think technically I was only supposed to use a couple of tablespoons of the starter yogurt. I put in all 6 ounces. Because I do what I want.
Plain, unflavored yogurt is also recommended, especially if you’re planning to use your homemade yogurt in other applications like making pizza dough or tzatziki. But I’m not sure if I can taste any vanilla in my final result. Sometimes I think I taste a hint, and other times I think my brain just thinks it detects a hint because it saw me putting vanilla yogurt in the pot.
This is tangy stuff. You’ll notice there’s no sugar in the ingredient list. If you’re trying to feed it to kids, they might find it too tart as is. You can blend in honey or jam when you serve it though.