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 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.
I had a phone visit with my palliative care PRN this morning. Long story short I’m going to take a short course of prednisone during CZT training to make sure I can do the thing. Because it’s only a week’s worth of generic ‘roids at a low dose, my Rx only costs about $4.
Which brings me to the whole “Medicare can negotiate drug prices” part of the Inflation Reduction Act. I’ve read in a few places that it will benefit seniors specifically, but I’m not sure if disabled people on Medicare are just casually being erased from the headlines again, or if I’m still extra screwed. I’m trying to find an answer.
This is just one reason why I’m still engaged politically when I should be “focusing on getting better.” My shingles vaccines, which I’ve mentioned before, cost $200 EACH, for example, and I’m not allowed to make enough money for our household to survive or they’ll cut my disability income completely and we’ll have even less than not enough.
Maybe if the “safety net” wasn’t an all or nothing proposition?
Bottom line, if anyone out there wants me to shut up about it already (and, yes, people do sometimes say it out loud) they can kiss my astrocytoma.
I’m relieved it’s only $4 for this prescription. The antibiotic ointment my oncologist prescribed a couple of weeks ago cost $35. Not exactly in the budget, and I prefer to put my creativity into Zentangling—not wondering how to afford medicine.
I know these posts aren’t fun for people to read. They are much less fun to write. But no one is going to do it for me. This is as boot-strappy as it gets for the girl who grew up in the most polluted county in Indiana. (In case someone tries to blame my cellphone usage for my brain cancer again instead of spending equal time wondering if our environmental regulations are too lax.)
