In case you haven’t seen me mention it on Twitter or otherwise heard me talking about it already, I got to speak with my oncologist (finally!) on Friday evening regarding the results of my most recent MRI. The radiologist’s report noted a “slight concern for progression” which had me a little freaked out for a bit. Well, the tumor board has recommended more “waiting and watching” of my brainstem tumor for now. So my next MRI will take place sometime in April.
The January MRI showed some change in the tumor that looked like a section of recurrence in my medulla (I talked about this briefly in my last Tangled Talk video), but because the change is so small, there is no treatment recommended at this time, especially considering I am not experiencing any new or more disabling neurological symptoms.
My doctor did say that because the recurrence is in a part of my brain that was previously treated with radiation, more radiation in that location is not an option down the road. Other treatment options, including clinical trials, would be considered if needed at some point in the future. But there’s no point in putting the treatment cart in front of the cancer horse, if you will.
So if you’re reading this update like, “What should I feel about all of this information, Emily?” I’d say feel what I feel—relieved. This thing is still slow growing, and knowing that makes it much easier to do more living and less worrying.
While I was waiting to finally speak with my doctor, I filmed and edited a couple of YouTube videos for my channel. Though I can push myself too far if I’m not careful, digging into those things keeps me distracted from anxiety and tires me out that it’s a little bit easier to sleep at night. Both videos I post are heart-themed for Valentine’s Day. (I’m trying to post some timely content to feed the masses and grow my channel.)
Zentangle Class and CZT Scholarship
In other news, I have signed up to take an online class in March from certified Zentangle teacher Holly Atwater. I already have my supplied, and I am really looking forward to it. (I’m doing the Monet 3D workshop on March 6 if you’re curious, and it looks like there are still some openings.) Since my birthday is in March, the class is a present to myself.
Another thing I did this past week was apply for a scholarship to participate in Zentangle’s upcoming CZT training. It was a little scary even just filling out the application, because committing to a multi-day anything with chronic illness can be pretty stressful. But it’s something I really want to do. I might not get a scholarship, and that’s fine, but if I do it would be nice. The one bizarre upside to Covid is that they are doing virtual training again. If travel were required, becoming a CZT would basically be out of the question.
Anyway, I’d appreciate some good luck vibes from everybody out there.
I’d like to invite you to Zentangle with me today. But first, an update for everyone who’s morbidly curious about the woman with the brain tumor: I’m still here. 🙂
It’s 46 °F in Urbana right now, and it’s supposed to be cloudy and rainy for the next couple of days. I checked the weather app on my phone just to be sure I wasn’t lying to you all about the forecast, but just know that my body already told me yesterday we were in for some crappy weather.
I took my last dose of weed chocolate (a chocolate peanut butter indica candy bar) last night to quiet the loudest of the aches and pains, and my pain level is still tolerable this morning. But I know that will be wearing off shortly. I can already feel the future settling in.
I have some oils and a couple of loose joints, but they are just not as effective as edibles for me. I really wish the dispensary would go back to curbside service right now. I can’t describe how badly I do not want to be inside the dispensary. Not only do I not want to brush my pandemic hair, put on actual pants, and increase my chances of being exposed to Covid-19. I just don’t want to do people-ing today.
Might they bring my order to my car if I call and ask nicely and explain that I’m a med patient? Yeah, maybe. But I hate the phone, too. I guess what I’m trying to say is that I’m going to be using up my vape and tincture remnants because I’m having trouble shaking off this depressive mood.
So let’s talk about something else instead. Like my YouTube channel. I didn’t post anything for the entire month of November because my creative resources were entirely drained after Inktober, but I’ve posted twice so far in December. Go me!
One thing that motivated me to start drawing and recording again was buying the first-ever Archer & Olive subscription box. (They gave me a referral link. Use it to get 15% off if you’re in the market for some premium bujo goodies: http://archerandolive.refr.cc/emilysuess)
The subscription box is a limited-supply quarterly thing (you can watch me unbox the contents here) that cost about $70. I would normally feel guilty about spending that much money on notebook and stationery supplies, but 1.) I just deserve to be happy sometimes, and 2.) I am confident it’ll help me grow my YouTube channel.
So anyway, the unboxing video didn’t perform so well. I actually had a net loss of subscribers the day I posted it. And that bummed me out. It’s not that I need every video I make to do well, but because the video was outside of my usual it took me longer than usual to edit it. Plus there was a voiceover with it, and that adds about 4 extra hours of work. There’s definitely something deflating about putting all your very limited effort into something that you’re super geeked about only to have the world be like, “meh.”
I plan to keep doing the bullet journal videos, though, because bullet journaling is what’s going to help me organize the rest of the content I produce. I figure I might as well have to camera rolling while I’m doing it. The #bujo community on YouTube is huge, and it seems like such a great fit with Zentangling. Anyway, I’m excited about it, even if no one else is at the moment.
Anyway, there’s a new Zentangle-only video up today for Patrons (tomorrow for everyone else). If you could use some simple, cheerful art to brighten your day, you will probably really enjoy this one featuring the pattern Alcatraz by Diana E. Marshall. In it I draw the Zentangle art at the top of this page. It’s not an overly intricate tile, so it’s a good Zentangle to try if you don’t consider yourself artsy but still want to Zentangle with me.
I did something I’m really proud of last month: I posted a new Zentangle video every day in October. It wasn’t always easy, and the drawings weren’t always good, but I persisted until I accomplished the thing: my Inktober Zentangle 2020 prompt list.
Inktober was something I really wanted to do despite the various things in the world that were working against me: cancer, Covid angst, election angst, roofing contractor woes (that’s a whole other blog post, folks. I can’t even with that right now.)
Before I even started the Inktober Zentangle series on my YouTube channel, I warned Dan of my intentions. I told him to expect me to be pretty much useless to do anything else for the entire month. Because if I know me—and I do know me pretty well—setting aside the time for drawing and editing every day meant stealing it from something else.
That’s because I already triage essential daily tasks like eating, cleaning, showering, and managing cancer as a matter of course. Whatever things I reprioritized to make space for Inktober, they were going to be big-ticket essentials. And “reprioritizing” for me doesn’t mean “I’ll get to it later than usual today,” it means, “I will not get to it at all.” Things don’t move down a to-do list this short, they move OFF the list. Permanently.
So, probably a big “DUH” here for folks in the know, but October was a challenging month for both Dan and me, what with us perpetually negotiating our respective diseases in the midst of my “vanity” project.
The most notable problems we faced: eating and cleaning. On the average, we eat OK. We do not go hungry, which I am deeply thankful to be able to say, but what some people might eat as a treat or a convenience because time’s limited makes up a large part of a disabled person’s diet OUT OF ABSOLUTE NECESSITY.
And moving past eating to the cleaning stuff: Nothing got cleaned beyond a couple of necessary loads of laundry and the evening running of the dishwasher. Every time I look at my surroundings right now and see what needs to be done, my heart breaks and my stomach drops. I will probably have to raise money and hire help eventually, but no one’s coming in our door while Covid numbers are spiking again anyway. So I whisper that line to myself about being able to accept the things I cannot change.
Some evenings during Inktober I’d be on the verge of tears from the exhaustion saying, “Don’t make me do the GrubHub order tonight. I can’t.” And “can’t” was never an exaggeration. If my energy levels are depleted that far on a recurring basis, what manifests outwardly is an overtired 7-year-old girl in a 40-year-old woman’s body. There are breakdowns and meltdowns and outburts. These are not self-indulgent, whiny fits. These are biological things humans do when their bodies and brains “just can’t” anymore.
I imagine what I experience as a woman with disabling brain cancer is akin to a neurodivergent child being forced into an abled child’s classroom every day. The exception being that I’m generally extended a lot more grace because the “C” word is harder to sweep under the rug.
Tangent. Sorry, not sorry.
Anyway, I also knew that when I finished my last Inktober video there was going to be a really hard crash for me at the end. It was worse than I had anticipated though. So far I spent the first three days post-production (I was working 2 days ahead of the calendar the whole time) in various states of distress. It started with exhaustion, progressed to a migraine (complete with aura, numbness in my right arm, heightened noise and light sensitivity, nausea, and aphasia) and then turned into a sore throat, head congestion, and low-grade fever.
My fever broke overnight, but I feel like an absolute trash pile of skin, bones, and pajamas still today.
Because when I am that rundown, my already chemo-blown immune system is powerless to even sneeze at a mote of dust. What my pre-cancer body would have fought off virtually undetected, my post-cancer body is forced to entertain for days—sometimes weeks—at a time.
Coincidentally, this is why at-risk members of the population are absolutely disgusted by the selfishness of the anti-mask wearing crowd during the pandemic. We, people whose lives are already hanging by assorted threads of questionable strength, do not have the time or the energy for the tender care and keeping of some uneducated, overinflated ego.
Fighting cancer is equal parts maneuvering around the disease and dodging other people’s selfish bullshit. And believe me when I say that I’m not living with brain cancer AND smiling while Joe Bob McTrumpster pretends his right to spread diseases to me is more important than my health and safety.
I am not your inspirational cancer porn warrior on Sunday and someone you can spit on Monday morning.
I’m putting the world on notice: don’t make me make room for your shenanigans. If I put schooling you on my to-do list instead of, like, eating, you are not going to like it.
Ahem. Guess I had some things to get off my chest, there. But let me just sum up this entry by saying that doing a Zentangle every day this past month was rewarding despite my challenges and limitations, and hearing back from people who enjoyed them gave me the strength to keep going. Thank you.
Happy Friday and happy Inktober! You know, if you’re doing that. I’m just popping in to update you on my progress with the Inktober Zentangle challenge. So far the response to my videos has been encouraging, and I’m glad I decided to give Inktober a go this year. There are a lot of days left, so we’ll see how I feel in another week or two. lol
First, I am happy to report I’ve posted a video *every day* so far. No small feat considering my health, but I’ve been lucky that there have been no additional setbacks on that front.
You would think drawing everyday would be challenge enough for me, but I had to go and promise a new video with each Zentangle on top of it. (Why am I like this?) One thing I am realizing is that in order to finish a video every day, I cannot always finish what I attempt to draw. If I’m not done drawing by 1:30, I just stop where I am. Because I still need time to edit the video before completely crashing for the day.
I’m learning to be OK with unfinished pieces, but the old, pre-cancer me that’s buried in there somewhere really, REALLY wants to feel “done” with each Zentangle.
Every night when I finish editing, I say to Dan, “I need to stop trying to tackle so much and just do littler, simpler things.” But then the next morning I am back to my old ways, trying to take on something I really have no business attempting until 1.) I learn more about making art and 2.) I don’t have the time constraints of Inktober to contend with.
Anyway, here are a couple of my favorite Inktober Zentangle videos from the first nine days of the challenge. If you want to see new videos as they are published, by sure to subscribe to my YouTube channel. If you’re a Patron, remember that you can access videos a day before anyone else (without ads!!). Just go to my Patreon page to get the link for the October early release playlist.
For years, I have been watching as my internet friends participate in fun challenges like National Novel Writing Month (NaNoWriMo) and Inktober, Well this year, I am finally able to join in the fun with Inktober 2020. I am going to be posting a new Zentangle video on my YouTube channel according to the unofficial Inktober Zentangle Prompts I made.
Day one went live this morning, and fingers crossed people will find it enjoyable. Although I try to remember that doing things *I* enjoy is its own reward, there’s always a part of me that wants other people’s validation. I think they call that being human. 🙂
It took a lot of planning beforehand to even pretend that this was going to be a possibility for me. Brain cancer and the resulting disability leave me with very little energy to do things. But Dan has sworn to help me this month as much as his chronic illness allows. (Essentially, he’s going to be helping me eat on schedule, because my biggest problem is getting sucked into my daily drawing and video editing schedule and being too exhausted to slap a sandwich together.)
Our failsafe for days when we are both exhausted is the handy-dandy meal replacement shake, so that, like, if it’s noon and I’m not anywhere close to taking a lunch brake, Dan can bring me one to tide me over until dinner. They don’t taste the best, but they have protein, fiber, and vitamins. And they keep my body from going completely off the rails for failing to provide it consistently with fuel.
I imagine we’ll be getting Grubhub or DoorDash or whatever a lot more this month too. At least, as far as the budget allows. One way or another, I am determined to get all 31 days posted. Fingers crossed nothing thwarts my plan!
Anyway, Happy Inktober! If you’re doing this challenge too, let me know!