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.)
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.
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?
MRI results are in. The radiologist’s report showed up in my patient portal. Long story short: “Previously described enhancement in the mid ventral medulla appears less pronounced on the current exam.”
As a cancer patient with an inoperable brain tumor, I feel like the word “appears” is doing some extra work. But I mostly feel relief. It hasn’t grown!
I texted my immediate family last night with the MRI results, and then added Double Stuf Oreos and Ben & Jerry’s to the curbside grocery order that Dan picked up this morning.
I used to number these scans, but I’ve lost track and don’t feel like counting all the reports in my patient portal. Maybe later. I’m averaging about 5 a year since 2017. So I’m guesstimating around 25? Maybe?
As usual, the radiologist noted THICC mucus in my sinuses. At this point, I blame the cat. I am slightly allergic, and my immune system is borked. Plus blaming Izzy is payback for all the times she’s fished cellophane out of my trashcan this week and left it for me to pick up.
Meanwhile, construction continues at Mom’s. She told me the shower is no longer in the garage, they moved it inside. (w00t!) It’s one of those big-ticket fixtures that has to be placed first, and then they’ll build around it. So, yeah, kind of a big deal.
By the way, another $400 in donations will pay off the unit AND installation. Which is under 50% of the goal we set, but is also more than I expected.
I’ll probably have more ice cream to celebrate reaching that milestone. Ice cream has always been my favorite food. But with stomatitis, it’s medicinal, okay? Leave me alone.
Mom said they hoped to have framing finished for the whole basement this weekend. It’s taking shape, and the progress is exciting to watch.
More updates when I have them. Enjoy your #Caturday, folks.
Good Lord a lot has happened since my last post, and advanced warning: this one is not going to be my feel-good entry of the year.
When we last left off, I was promoting my second-annual, read-it-for-free-in-March promo for Who You Gonna Believe. That went reasonably well, and a few people told me they enjoyed reading it. Always nice to hear!
I was a little late in setting the chapters back to patron-only after the promo, but I did manage to get that done a few days ago. For what it’s worth, I’ve decided to leave the first seven chapters open for public consumption from here on out instead of just the first one.
Shortly after my birthday on March 4, I took that Zentangle class I mentioned. It was a few hours long, and though I enjoyed it immensely, I knew that I had reached my absolute limit for online learning. That, in turn, made me worry about the Certified Zentangle Teacher scholarship thingamajig I’d applied for. I went from “oh, I hope get a scholarship” to “shit, I hope I don’t get it but if I do, I have to power through it.”
Well, luckily for me the Zentangle people notified me a few days later that I hadn’t won the scholarship anyway. That settled that, and I was so relieved.
But then my whole world came crashing down. My Dad died on March 22. As you might imagine, I’ve still got a lot of grief to work through. He hasn’t been gone that long and… I can’t even right now. Maybe I’ll try again later.
So naturally, the universe had me scheduled for brain MRI #21 this week, and I learned that my brain tumor has indeed grown. There was a little uncertainty about it after MRI #20. So Monday’s MRI included the more detailed perfusion imaging.
Anyway… I still haven’t summoned the strength to look at the official report with the specifics, but my oncologist described it to me as “small growth but in an area that makes her nervous.”
I feel like I had the wind knocked out of me by a duffel bag full of grapefruit when Dad died. And then, just as my respiratory system came back online and I took a big gulp of air in, I took another blow to the gut. I’m not going to sugarcoat things right now. It’s all a lot, and it feels like Dan and I have been dealing with various forms of A LOT™ for going on 8 years now.
My local oncologist is working with my oncologist back at Barnes-Jewish in St. Louis for me to have a consult. Clinical trials, potentially another round of radiation, and other meds are being discussed. Though I don’t know what my treatment plan will look like yet. Tumor boards have to review these things and whatnot. So I’m in a very hellish sort of limbo at the moment.
For what it’s worth, my first choice for getting care is Barnes-Jewish, and there’s a clinical trial going on there for IDH mutations (which I have) but I think it’s for Grade III tumors, and mine’s a Grade II. I don’t know, my doctors are looking into all the possibilities. Barnes is my first choice because it’s familiar and it’s close to my mom and my brother and sister-in-law.
In fact, Dan and I have talked off and on about moving closer when additional treatment was all hypothetical. We’d floated the idea of moving to be closer to treatment and our support system. Urbana is lovely, but we moved here because I got a job here. Now that I can’t work, I feel like we’re floating on a little buoy with no land in sight.
Of course, thinking about that kind of change in hypothetical terms was easier for me to wrap my brain around. Now that every little decision feels overwhelming and I can’t even decide what to eat half the time, I doubt I could handle all that a move would entail. I know I’m looking too far ahead, and that I should be in one-day-at-a-time mode, but knowing it and achieving it are worlds apart.
Anyway, for the time being my Zentangle videos and new chapters of WYGB are on hold. If I feel like working on those things, I will. But they’re just not a top priority. Clawing my way through the super important stuff until I reach a little daylight is my main mission. I will probably be posting updates here on the blog and on Twitter if you’re looking for them.
On Monday night, I had my twentieth brain MRI. It was just another routine scan to see if there were any changes in the malignant tumor on my brain stem, but the outpatient hospital visit was more distressing than usual.
And I mean aside from the pandemic protocols that didn’t allow Dan to come inside with me.
After checking in at the radiology desk, I scooted down the hallway gripping my walker and found my way to the secondary waiting room. I was hoping the room would be empty like it was back in July, but there was one other person in the room. A man, probably in his early- to mid- twenties. He was listening to someone on speakerphone.
I chose the farthest seat from him in the waiting room. We were both masked, but given the choice to be exceedingly cautious or increase anyone’s risk by one tenth of one hundredth of one thousandth of a percent, I took a few extra shaky steps.
I turned my head toward the waiting room TV and tried to focus on the “Chopped” contestants and their basket of squab, poblanos, and a some weird-ass fish made of chocolate when I realized that the man wasn’t talking to someone on his phone, he was listening to a podcast or watching a video or something without headphones. I was mildly irritated.
I don’t know if I’ve mentioned this here before, but I can’t single out a line of audio when two things are competing at the same time. Whether it’s a result of the tumor, a side-effect of radiation or of chemo, or just the result of being under persistent stress for years, it’s impossible for me to do. I could kind of feel the words being spoken, though. The rhythm and tone of what was coming out of the man’s phone gave me very cishet, militant Baptist vibes.
I pretended to look past him while checking for a mask, wondering if I’d seen a mask when I walked in or if I’d just assumed he was wearing a mask.
He did have a mask on. Good.
I turned back toward the TV, and in the brief silence between commercials, I distinctly overheard the words “they want you to be ashamed of your whiteness” then a little later something like “don’t be ashamed of your whiteness.” Then later, as the speaker was wrapping up, he thanked everyone for listening and said “I love you. We love you.” He said he and Pastor Todd or Pastor Jeff or something were praying for them or something.
It was nauseating. I checked to make sure I still had a vomit bag in my tote.
My waiting room companion was a white supremacist. And he was brainwashing himself. Having endured my share of emotional abuse, I know most all the greatest hits from “he must really like you, because you’re not that hot” to “they don’t accept you, only I accept you.”
What I’m saying is, if there’s a way to not be highly sensitized to this kind of manipulation in everyday life, even when not directed at me, I don’t know what it is.
I stared up at the TV and forced myself to smile behind my mask. Tamping down some emotions I’d rather not have alone in a room with a fucking white supremacist.
Folks, if you ever had an internal dialogue that goes something like, “He’s dangerous, but I’m white. If he goes postal, I might be OK”… congratulations! You’ve been terrorized, not directly by a white supremacist, but by the mere existence of white supremacy. And being able to calm yourself with the color of your skin is a sick type of privilege.
I have no additional facts to tell you about the waiting room nazi, just my gut feeling based on some subtle (maybe even imagined) cues from the guy. I think he was uncomfortable with the insurrection—the barbaric murder—and unequipped to deal with his discomfort. Instead of owning up and confronting his choices, he sought comfort. He went looking for someone to tell him he was right, because it was easier than taking responsibility.
Fall came to Central Illinois right on time. We’ve had the windows open and have been enjoying the much-needed fresh air. A couple of times we have even dipped into the 40s overnight and had to turn the heat on. Of course, we’re expecting a warm-up again for the next couple of days. But the damage has been done. Bring on the pumpkin pie and the seasonal coffee creamers. Bring on Fall. Autumn is my favorite season.
On Friday my parents came from the metro St. Louis area to visit with us. Still being cautious about Covid-19 and all that, we opted to have pizza out on the patio and Mom brought cake for us to belatedly celebrate my dad’s 73rd birthday. It was good to see their faces! Dan and I are hoping to take a day trip to visit them and have a meal out on their deck before it gets too cold to do so comfortably.
I’m in pretty good spirits lately. With MRI #19 out of the way and a boring (but good boring) visit to my oncologist earlier this month, my mind has been released from What-If Prison™ for another four months. As a result I’m feeling a little more inspired and productive. The results of the MRI show that my brain tumor is stable — meaning it’s still there but it hasn’t advanced — and I can stop obsessing over weather every little change in my symptoms is because of disease progression.
Cancer, man. It can really get you down.
This morning I published another Zentangle video to my YouTube channel. And I keep inching closer to my goal of being able to monetize my content there. The channel also continues to grow, even when I am unable to stay focused enough to work on it. That helps me stay motivated to keep publishing videos even if I can’t stick to a strict upload schedule.
I also gained a couple of new Patrons this month, and the mental boost that comes with the little financial boost helps too. I’m like, “Hey, now I can afford to buy another art supply!” I may be developing a little bit of a problem with art supplies. I really need to get organized in my office. (Maybe I should start calling it a studio? That sounds way more fun than office.) There is nothing more satisfying than making a pretty piece of art, but seeing an organized supply of paint, paper, colored pencils, pens, and markers might come in a reeeeeally close second!
We talked to Mom and Dad about Thanksgiving and Christmas this year and the whole family has just decided that we’re not doing holiday gatherings. It will be a little disorienting without those celebrations to anchor down the end of the year, but it’s also kind of a relief. Travel and planning can get a little hectic, and with the weight of the pandemic hanging over our high-risk heads it would just be added stress on top of worry.
What’s really nice is that we’re all on the same page about it. No hurt feelings. Just an abundance of caution to protect ourselves and the people we love. I will try to use the down time to plan to grow my Vast Media Empire™… ahem, I mean, plan content for my memoir, YouTube channel, website, and Patreon. If I have a little momentum going into 2021, I might just be able to turn more of the things I want to do into things I actually get done.
Fingers crossed we can collectively elect people in November that make next year slightly less of a dumpster fire.
That’s it for now. If I can maintain this creative energy for a while, I’ll be blogging again soon. What about you Are you saying “Bring on fall?” or are you hoping to hang on to summer a little bit longer?