When I was about 10? Maybe? I used to play Where in the World is Carmen San Diego on our family’s IBM. The den’s dark wooden shutters would be closed, and I’d put on headphones and listen to Simon and Garfunkel while tracking down a villain with a punny name, a copy of Fodor’s close by just in case I needed help with a clue.
Those earphones—cans, you might call them—were probably 20 years old. I think Dad got them when he was in the Navy. When I wore them, the painted fabric ear cushions would peel, the black fabric paint tearing off in little pieces and sticking to my sweaty cheeks.
I must’ve looked ridiculous wearing those giant things with the 6-foot-long coil plugged into the 1970-something receiver, sitting on a bookcase with a 6-cd changer, a tape deck, and a reel-to-reel.
I realize only now those were noise cancelling headphones, and I loved them so much because I was alone in my happy place listening to Simon and Garfunkel sing anti-war, anti-The Man poetry with some of the most beautiful harmonies ever recorded.
Dad had a 3-CD set. I want to say it was a collection of all of Simon and Garfunkel’s studio albums, but I could be wrong. What I do remember is the CD case was hunter green and the cover was a booklet with lyrics to everything.
In those days, I thought the whole world had learned something about war and authoritarianism and every adult was a hippie and went to Woodstock. I didn’t know I was naive. That even my own parents were squares, actually.
I didn’t know that I was the only fourth-grader on the planet who had not only heard S&G’s deepest cuts but could sing them by heart.
Anyway, Dan talked me into buying noise cancelling earbuds from Amazon this week. We needed new filters for the cat bubbler* and they had the earbuds on sale.
For the first time in 30 years, I heard everything. I thought I couldn’t enjoy music in that way anymore. Not since the brain tumor, but it turns out I just wasn’t listening the way I needed to. I teared up.
I’m going to preface this post on Medicaid Cuts by saying this: if you don’t get it, that’s not my problem. I don’t have the energy to help you understand why this matters on a larger, political scale. If you offer me worthless advice in the comments, I will reply with merciless snark.
Dan was kicked off Medicaid after 6 years. His current health insurance ends at the end of the month. All because I make $200 more per month than is allowed under new rules.
The rules don’t care that the annual price of one of his prescriptions is more than I make the whole year—far exceeding the “extra” $2,400 a year the metric says I make now. Or that the Patreon and YouTube income I report are not guaranteed. Or that I can’t afford my medical bills even with those supplemental sources. Or that Dan gets paid nothing to be my rock.
The rules do, however, mandate that we can’t save money for when something like this inevitably happens.
Making anyone deal with these things when there are other options is inhumane. Making the sick and disabled navigate this hellscape—repeatedly—is supervillain levels of evil. Even convicted sadistic fuckwads would think twice about doing this to other humans.
For me to get any kind of better or merely acclimate to symptoms of my relatively new and undiagnosed health problems, I require stability.
Friday morning they cut out one of my lymph nodes (my third ‘node biopsy but first excisional one) and shipped it off to a lab somewhere for examination. I should have the results of the latest lymph node biopsy within two weeks.
In the meantime, I’m feeling pretty alright. I was prescribed ibuprofen and a few oxycodone—which I wasn’t expecting—for the pain.
The procedure was done under sedation. So the last 36 hours, I’ve been feeling cozy as the anesthesia wears off and my systems come back online. Only a little breakthrough pain between doses.
Oh, and a lot of farting. My colon’s like, “Yay! We’re functioning again!”
The oxycodone makes me very drowsy, so I’ve been getting great sleep. In fact, last night was probably the best sleep I’ve had in 7 years. (I’m almost exactly 7 years out from my last surgery. You know, the brain one.)
Also, I realized something while peeing so they’d release me from the hospital: I feel more secure on a regular walker. So I just bought a used one of those puppies on Amazon for $22. That’s a freaking bargain! (I earned $18 in commissions this month, so it’s like I got it for $4. Thank you, you lovely people. I told you clicks help!)
If you’ve been around for a while, you know I did have the regular kind of walker after the 2017 craniotomy, but decided I needed the Rollator style with seat and then donated the other. (Dan has graciously not said ‘I told you so.’ Yet.)
The thing about the 4-wheeled walker variety? Good for sitting when you’re fatigued, but you need confidence that they won’t roll away from you. I don’t have a lot of that right now, and so I grip the brakes until my knuckles, wrists, and elbows are white. Which pairs nicely with my anxiety muscle aches. Too nicely. Both styles are great for different reasons, and I need both for different situations.
Anyway, did you know they’ve got these cute new charms for hospital bracelets now? Once a fall risk, always a fall risk I guess.
While going over the standard pre-op questions with the anesthesiologist, he was like “You still have the tumor?”
I was like, “Yeah. It’s a whole thing.”
Basically it’s in a spot no one was comfortable going too gonzo at with a knife.
But the tumor was a rare enough tumor, they were eager to put a few cells on ice. They sold me on the research idea by also explaining they could treat it more confidently if they knew what specific mutation they were dealing with. So a neurosurgeon did a little scrape-y scrape.
You wouldn’t believe how frequently I have to explain that to non-neurooncologists. The only thing I repeat more is how to pronounce my last name.
But I digress. (That’s how you know it’s really me writing this post.)
The lymph node was taken from my left groin. A spot not discussed during consults but the very location I dreamed about a few nights ago. Could be a coincidence, but I think I’m just really in tune with my body out of sheer necessity.
Anyway, I’m going to relax while I can. I’ll hit you all up for more clicks when the bills for this shit arrive.
One of the things I’ve heard over the years and have been reminded of recently during guided meditation is that sometimes the sun is obscured by clouds and though I can’t see it, I can find comfort in knowing it’s still there.
Well, it’s been raining here for days, and I’m starting to have my doubts the sun is real.
Just kidding. I know it’s still there, but I’ve gotta pop some Vitamin D3 anyway.
I’m approaching the seventh anniversary of my brain cancer diagnosis, which, as you might imagine, has me feeling some ways. I’ve been thinking a lot about my road to diagnosis, which led me to revisit this post about how to get your doctor to listen.
Hey, I just realized something: like the sun, my brain tumor is still there.
I re-read that post I wrote for the first time in a while and didn’t find it a trigger for my anxiety. Maybe that means the meditation is helping. I say that because once upon a time just remembering that rheumatologist’s name would make me want to key the word “asshole” into his car.
Anyway, one week until my excisional lymph node biopsy. I only have $600 in outstanding bills so far. This round of undiagnosed whatever is a lot more affordable than brain surgery.
I still can’t pay for it on SSDI, but if I make it another 7 years, whatever collection agency buys the debt might give up.
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!