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!
Things kind of suck right now. I don’t want to list all the reasons why, so you either have to take my word that it’s worse than I let on or think me a drama queen with a penchant for vague-blogging. Honestly, I don’t care which it is. What I will say is that I have to make a trip back to the house I was hoping to have been done with and the New Digs only have one working sink–a wash tub–in the laundry room. I can’t tell if things are still hard because I set my hopes too high, or if things are genuinely hard. In the interest of giving myself the benefit of the doubt, however, I’m just going to say things are still as hard as they were, just in different ways.
The financial pressure that I had hoped would ease has not yet, and it’s impossible for me not to think about money constantly. Maybe once the house in Urbana sells? Maybe once we have a functioning kitchen? I don’t know. There are things we need but can’t afford and there are things we don’t need that I’m being pressured to bring back here. I love Dan. He knows this. He also knows that his refusal to part with material things makes my life infinitely harder because I’ve said so many, many times. So instead of dying mad about it, I’m going to type it here: His stuff burdens ME. Also my Mom is—and I say this lovingly—very particular when it comes to housekeeping . And we are not.
Fuck it. Let’s just write this thing.
It’s not that I wouldn’t like to have a tidy house all the time, it’s that two disabled people physically CANNOT. And Chad, our robot vacuum won’t run here. I contacted support about the correct app for the Neabot not being in the Google Play Store any longer and received a reply the next day saying to download a different app that, as it turns out, is also not in the app store. Call me a pessimist, but if customer support doesn’t know what apps they have published, I think we’re going to have to buy a new robot vacuum. So while I was previously very happy to have Chad and would have posted a link to his Amazon page, I refuse to recommend him now.
And leaving out affiliate links is no small thing for me either, because we are fucking broke. Again. No, we’re not in danger of losing the roof over our heads or going hungry at least, and I want to make that clear. But I have to find doctors and make appointments, and try to be presentable when plumbers and cleaners and electricians get scheduled. There’s no room for “panic about money again” in my datebook.
I need a haircut and to feel like I don’t wake up every morning with two different sets of eggshells at my feet. I need the thermostat to show up on my phone or the weather to stabilize so I don’t have to fucking get up to change it. And I can’t let any of that shit go very easily because I’m not just money broke, I’m energy broke. I’m not saying any of this to get help either, because saying thank you is also a fucking burden.
Again, I’m not always this cranky. But stress has reversed my chemopause, and my words are the sharpest thing on me right now. Speaking of chemo, other people want me to be taking it right now. Fuck other people.
I’m overwhelmed. People would help—have helped—but I can’t even brain hard enough to figure out what else to ask for. I’m shutting down. Not because I’m stubborn, but because I have already used up my spoons for the first and second quarters of 2023.
Earlier this week Mom said something to me about how we shouldn’t really have the pets, which hurt. I told her flatly that we got the pets before I was diagnosed suggesting the ever-popular excuse “Nobody predicted any of this in 2015.” She nodded in agreement, but it would be helpful if I wasn’t constantly defending my every fucking life choice all the goddamn time.
I’m trying not to let stuff get me down, but being in the middle of every unspoken conflict and trying to keep the peace is not anything I have the capacity to do right now. I deflect what I can, but I end up absorbing most of it. Which is probably why I’m muggle sick, sporting a cold sore, and perpetually exhausted. My Mom is in her seventies and can run circles around both of us. She has done so much, but the one thing she can’t do is empathize. It’s not a shortcoming, no one knows what anyone else is experiencing at a given moment, but it’s also not something I can handle well.
Until our kitchen and bathroom countertops are installed, we have zero use of our kitchen, and we can’t really unpack anything. We’re living out of boxes in various rooms and at least a dozen times a day one or the other of us is asking “Have you seen X?” We had to leave our refrigerator at the old house and are borrowing a dorm fridge for the time being. Mom is going to get a new fridge and let us use her old one, but Dan wants a French door fridge like we had and…Mom is getting a French door fridge. It’s her right to buy what she wants. And it’s Dan’s right to feel bitter about everything. And it’s my right to fucking scream until I’m blue in the face.
If you pray or send good vibes into the universe or whatever, please put in an ask that we actually get our kitchen and bathroom countertops on Tuesday as promised by the installers. At least once that’s done we can put stuff in cabinets and get rid of more boxes. I actually have a housewarming list on Amazon, but I’m afraid to post a link to it right now because we don’t have anywhere to put stuff people might want to give us. If you want to help, maybe watch a video on my YouTube channel instead, because I’m probably not going to be able to put up a new video for a while longer and I don’t want the algorithm to think no one cares anymore.
On a more positive note, we got our first bit of feedback on the sale of the Urbana house, and it was all positive. Despite our inability to fix cosmetic things, the structure is in excellent shape. And the feedback we got on the price we’re asking is “just right.” The house was listed Monday and we’ve already had 4 showings. That paired with the fact that inventory is so low in Urbana have me hopeful that it will sell soon and with much less fuss than when I tried selling off that hunk of junk condo I had to lawyer my ex-husband out of.
There’s more, if you can believe it, but I’m tired and typing hurts.
Today I’m kind of a mixed bag of hope and first-world despair. My disability check posted this morning. (It was Patreon, a much-needed but also much smaller source of income, that posted on Monday.)
For kicks, I decided to check on my closest McDonald’s* (the only one for miles not owned by the family of Rodney Davis) but it’s still not delivering through GrubHub*.
I’m worried they’re not renewing their contract now and I’m trying to sort out what to do about chemo now that the only joy my tastebuds have in life has been taken from me.
Will I even take temozolomide again?
I’m just kidding. Lighten up, loves. It’s only brain cancer, and there are still Ben and Jerry*.
Also, before anyone goes to the trouble of suggesting it, the restaurant is on DoorDash, but we don’t like to talk about DoorDash here.
Oh! Talking about chemo reminds me! A CounterSocial friend sent me a link to this article while I was suffering from insomnia last night: New Injectable Gel Offers Promise for Tough-to-Treat Brain Tumors. It’s for GBM, which is not my type of brain cancer, but it’s the most aggressive type of brain cancer, so that’s very cool. There’s also potential for this “brain caulk,” as my friend called it, to work against other solid Tumors. Breast cancer was mentioned.
Let’s go Badgers!
My supply kit for Zentangle training arrived yesterday. I went through the checklist, read the info packet, and now I’m just like, can we start this now? How about now?
Give me hope and a couple of things to be grateful for (like CZT training, a more-than-generous GoFundMe donation, an FBI raid of Mar-a-Lago, and an accessible shower) and I almost—ALMOST—dont feel sorry for myself about the universe putting my beloved caramel frappe just out of reach.
Since I was still awake at 5:00 am this morning, I’m not committing to anything that can’t be paused for a nap for the rest of the day. Probably going to tuck into a 6-hour video on drawing the eye—part of a drawing instructional series taught by Marc Leone of Northern Kentucky University. (See The Drawing Database channel on YouTube if you’re looking for a non-profit, collegiate approach to studying drawing. It’s kind of amazing. And its freaking free!)
I had an appointment to see my oncologist this morning. A 6:45 am arrival for a 7:00 am appointment . Followed by labs. Followed by a Covid booster. The cancer center was mostly quiet.
My doctor mentioned the good results from my MRI, and then we got down to business. I told her how I had to pause chemo—again—and explained how I was battling fatigue and some painful cysts and that they usually go away on their own if I give my body a break from the temozolomide.
Of course, she wanted to have a look at my armpit.
She told me the medical term. “OK,” I said. It was two words that I didn’t comprehend at the time, and I don’t think I’d even recognize them if I heard them again.
Anyway, she said if I wasn’t taking chemo because of the cysts, that wasn’t a very good reason; she could prescribe antibiotics. But if I wasn’t taking chemo because of fatigue, that was a good reason to take a break.
I explained that my fatigue was severe. (Though maybe it’s because my body is fighting that skin infection, now that I think about it. Who knows? There are just way too many variables.) And we agreed that I’d call in for the antibiotics if my skin didn’t keep getting better.
The labs were one stick. The vaccine was also no big deal. The hardest part was being in the infusion center where the staff’s voices were bouncing off the hard, sterile walls. Sounds hurt me these days, and I felt like they were all screaming at me. They weren’t, of course, but tell that to my ears. Or maybe don’t. Yeah, definitely don’t.
Back to my oncologist though. She was asking me about my fatigue and probing with follow up questions, probably because my responses were short and not entirely helpful. I explained how I spend a lot of time in bed and never went anywhere, and she looked up from her notes and looked at me and said, “So coming here is really an ordeal for you isn’t it?”
“Yes,” I agreed. But what I’m thinking now as I write this is “YES! THANK YOU.” Sometimes I need for my exhaustion to be someone else’s idea, because explaining it is too great a burden. Sometimes anything more taxing than a simple yes or no is just Too Much™.
I wouldn’t even be writing this now if I werent afraid of losing my thoughts and recollections. That reminds me, the doctor asked about my second shingles vax, and I confessed I hadn’t done it because I’d completely forgotten about it.
That just goes to show you how drained I am. I pressed for this vaccine myself because I had the shingles back in December, and they were unbearable. And I never ever ever want to have them again.
Note to self: Always use the Heart and Vascular Institue hospital entrance. No noses in sight, and personal space abounds.
Yesterday’s MRI experience wasn’t the worst I’ve ever had, but it also wasn’t the best. I skated by a couple swarms of visitors on the elevators, and it was such a relief.
Because radiology is in the basement, everyone saw the elevator was going down and waited to catch the next one. There was a properly masked woman in scrubs who got confused when I boarded.
“What floor do you need?” she was ready to push a button for me.
When I told her I was going to the basement, she seemed less concerned. “Oh! Well that’s where we’re going!”
Then she led me to the MRI check-in and even pushed the wheelchair button so I could shuffle on through with my rollator.
After checking in, the MRI tech tried to start an IV for the contrast. When techs hear I’m on chemo, they always ask so hopefully if I have a port.
“It’s oral chemo,” I reply watching the light fade from their eyes. We both know chemo veins are rat bastards—and to make things just a little more difficult, a larger-gauge needle is required so they can get the contrast in quickly. “I’m pretty easy going about this,” I say encouragingly.
It took three sticks altogether. After a little digging on my right arm, he said, “I’m not a proud man. Let me get a second set of eyes.” A nurse came in and got one going on my left arm, but there was some discussion about veins and I remember her repeatedly telling me to keep breathing.
I didn’t realize I was holding my breath, to be honest.
Oh yeah, that’s why I feel lightheaded.
I’m not squeamish when it comes to needles, but my brain can’t do two things at once. Like, say, breathe AND wish the MRI was over.
Inside the tube, they played some piano music. Instrumental, but I recognized a hymn from my church-going childhood, and I immediately pictured my dad standing in the church foyer.
Now, for those of you who’ve never had an MRI, you have to be really still in the machine or you can blur the images and they have to start over, making an unpleasant experience drag out even longer.
So naturally, being exhausted, I felt some breakthrough grief welling up. I was on the verge of sobbing from my shoulders, the way kids who fall off their bikes do, but somehow I managed to stifle it.
I think I was able to suck it up by reminding myself how long my head would be strapped into the brace even if everything went perfectly.
An hour and a half is a very long time to be perfectly still. A solo piano version of Leonard Cohen’s “Hallelujah” played next. That song desperately needs to be sung. I mean, it’s an amazing song. But it’s overdone now. And then for the melody to just be plinking keys without feeling or dynamic range? Gah! It was awful.
I’m 95% sure it was an electronic keyboard actually. It was emotionally flat, so either synthesized sound or the pianist was a psychopath.
It was a long 90 minutes folks. When “All I Ask of You” started playing I remember feeling curled up and twisted from head to toe. I reminded myself it was physically impossible to be in the position my brain was trying to tell me I was in and still be on the MRI table.
But the song wrapped up at almost exactly the same time the screeching ended. I was pretty dizzy, so I asked to be wheeled to the main waiting area. The MRI tech took me on a staff elevator, where everyone was properly masked.
Dan picked me up. I ate ice cream. I am a bad ass. The end.