If you like stream-of-consciousness posts, you’re in for a treat today.
I got one of those grabber thingamajigs yesterday. My CranioCradle ended up under my bed for the umpteenth time, and I decided I was tired of asking for Dan’s help retrieving it.
And, yeah Boomer is half retriever, but if it’s not a blue rubber chicken, forget it. Dan asked Boomer to go to Meijer for a waffle iron in 2015. Still waiting.
I did enjoy asking Dan to grab my grabber from the front step a little too much though. Related: I’ve got a new idea for a follow-up Alanis Morissette song.
I wasn’t opposed to having one of these things up until now. The problem was just remembering to buy one. But now I can get toilet paper out of the linen closet without asking Dan to use his tall person skills.
(He’s still on pet poop duty though. Don’t want him feeling like I don’t need him.)
If you’ve known us for a while, you might recall we’re suckers for naming plants and inanimate objects* around here, and I thought I might name the new contraption Jack. (It’s a reacher. Get it?) But if you’ve got suggestions, let me know. I’m going to postpone Naming Day for a bit.
In other news, I’m getting my second shingles vaccine Monday morning. My Covid booster ended up getting pretty red, swollen and itchy. In the shower I was like, check out my left delt! Until I realized I probably needed a Benadryl. (Latest labs showed my eosinophils were up. Thanks, chemo.)
I was going to say my immune system is trash, but I should be nicer to it. It’s doing the best it can with what it’s got.
Enjoy your weekend, kids! And stay vaccinated.
* See also: Chad, our robot vacuum; Pipsquatch, our mini Bigfoot lawn statue; Hal our linden tree, and Carl the Rescue Ficusᵀᴹ. True story: Carl would sometimes be put on the patio for drinks when it rained and we’d be all, “We told you to stay in the house!” Tap, tap. Is this thing on? Any Walking Dead fans out there?
What has two thumbs and is in a really good headspace today? I’ll give you three guesses.
I don’t know if you can relate, but I’m a little reluctant to announce stuff before it actually happens because…what if it doesn’t, and I just look like an ass?
Well, I’ve decided today I’m gonna share some good news, however prematurely, because I’m excited and can’t keep it in. I’m attending the online Certified Zentangle Teacher (CZT) training this September!
I promise I’m not going to give you an “I’d like to thank The Academy” speech—I’m not that full of myself…yet—but I would like to acknowledge that it wouldn’t be possible without a lot of people pulling for me. Some who had no idea I even existed a few days ago.
In the interest of privacy, I’m not going to drop names here. But I want to tell you about my Zentangle friend. I’ll call her ZF to make this easier.
ZF isn’t just a fellow enthusiast, she’s a CZT who’s had cancer. When I mention towns most people have never heard of, she says, “I know where that is!” She checks in on me when I’ve been quiet. She encourages me to keep going. She even asks about Izzy, my cat.
When she called to give me the news that I’d be able to attend the training, she reminded me I was loved and to keep going.
And, if you’ve ever been diagnosed with the big C, you’ll probably appreciate what I’m about to say: encouragement from people who’ve capital-B-capital-T Been There just hits different.
ZF will give others the credit, tell you she didn’t really do anything, that so-and-so* actually made this happen. It’s true that other people could have stopped this train at any point down the line, but she got the thing to depart the station.
So I guess what I want you all to know is this:
My bad days are real, and I will no doubt face more of them. I will blog candidly about them when I need to, but the only way I know they’re bad days is because I have good days to compare them to**.
And the reason the good days exist is because of the goodness of people. People like my Zentangle friend.
Moral of my story: I believe sometimes paying it forward is simply saying the good stuff out loud. I don’t have money or the greatest health, but I have hope and purpose. Maybe it’ll help someone out there to know one of the reasons why.
*Not their real names either.
**I know so many others have made this point before and have done a better job too. So thanks for indulging me.
Mom says that work is still happening despite all the rain in the St. Louis area. The plumbers and electricians are making noise in her basement. Just one more item to add to the list of things I’m grateful for—not dealing with the sounds of the renovation. I’m sure it wouldn’t help to hear hammering and sawing while the effects of my second covid booster are wearing off.
Speaking of that second booster. I don’t feel nearly as tired as yesterday, but I do still feel like I am getting over the flu. Kind of achy. Suppressed appetite. Maybe that’s not too terrible for the cancer muggles, but you all know I have some, uh, health stuff going on.
Honestly thought I’d beat a lot of people to the fourth dose, but I was given Evusheld. I think the recommendation is to wait a couple of weeks after that for another vaccine if you’re due for one. Add the wait time for that to the various chemo and cancer complications, and yesterday was the first chance I really had to get caught up.
Speaking of vaccinations: Mom said she would cover the roughly $200 out-of-pocket on the second shingles vaccine for me when I get it. (Yes. It’s a lot if you’re on Medicare and under age 50. Just a heads up to any of my fellow immunocompromised and disabled folks out there who might need it.)
And a reminder to everyone currently healthy: heathcare in the US is still an abomination. I know when we’re blessed with decent health, we think it’s forever. But it’s not. Plan accordingly.
Because I’ve been so tired, I’ve been watching a lot of art documentaries on YouTube from bed. It’s amazing to me how completely contradictory two docs about the same subject can be. One will state nonchalantly that Van Gogh’s success wasn’t realized until after his death, and the next one in the queue will emphatically state that his lack of succes is just a common myth.
But success is arbitrarily defined, isn’t it? And it depends who you ask, doesn’t it? If Van Gogh had considered himself a success, there isn’t much evidence of it. Seeing how he died of a self-inflicted gunshot wound and all.
So philosophically speaking, are you a success if only you realize it? As long as others recognize it? How many others? And do others have to be your contemporaries or can others call you a success hundreds of years later because some big-shot commissioned your work in a time when mostly big-shots commissioned paintings? And does it matter how close to the end of your life you were?
Doesn’t really matter to me in the here and now, but I like to ponder things that don’t involve my own cancer. You know, as a treat.
I’m just rambling at this point, so I’ll wrap up with a link to the renovation GoFundMe and wish you all a happy Taco Tuesday. Burritos are also acceptable.
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.
I’ve been feeling off-kilter for a little bit. What else is new, right? Let it be.
I talked with Mom about more construction stuff yesterday and my head is a jumble of information. The plans haven’t changed a whole lot, but how I have to think about them has.
I don’t pivot quickly from thought to thought. It’ll be fine as long as I stop trying to solve future problems in a space that doesn’t exist yet.
My mantra at the beginning of this year was “let it be.” I need to get back to that. There will be an answer.
Cancer—and especially chemo—tend to accentuate how little control I have over this life. Sometimes that feeling can swallow me whole and make it hard to discern what things I can change and what things I can’t. But if I sit back for a second and let stuff happen without trying to force the outcome, the things I can’t do anything about will sink to the bottom.
Not dwelling is how I avoid anxiety and depression. But not dwelling is also damn near impossible sometimes. If you know, you know.
It’s not easy waiting for the things I can’t control to get out of the way because there’s a lot my brain wants to process. But…I dunno. It’s just something I’m always working on. Because I got used to doing #AllTheThings at once, and I can’t even do two things at once anymore.
Pause for this shameless GoFundMe plug.
Now back to regular programming.
Thursday night Dan and I watched the mid-season finale of the January 6 hearings. Coincidentally, everyone I talked to yesterday mentioned they had watched them too. I feel like the enduring narrative for 1/6 will be closer to the truth now. And that’s comforting.
Of course, attempts to gaslight the gullible will continue, but maybe now the lies will only endure in the minds of a subset of people. And that’s just how it always is with anything. I can let that be. What I’m really having a hard time with is waiting patiently for the September hearings they’ve announced.
Nothing heals my anxious mind like a good fact, no matter how troubling. Lies trigger my PTSD. (Genuinely. Literally. I’m not using rhetorical bullshit to make a point here.)
Anyway, the hearing ended kind of late, then I stayed up for the legal commentary, and then I lurked on Twitter for the memes. (I was not disappointed, either. Twitter absolutely roasted Trump for the speech outtakes and Hawley for the footage of him fleeing.)
It all caught up to me last night, so I took half a Xanax. It helps me unlock the screaming muscle tension in my neck from sitting up too long in an uncomfortable piece of furniture and makes me drowsy.
It worked. I feel rested this fine Caturday morning. Izzy sends her love.
I’d post better pictures of Boomer, but he is rarely here in the Chemo cave. He and Dan are attached at the hip. About the only snaps I get these days are blurry, poorly composed pictures of him begging for cantaloupe.
The accessible shower is in! If you get updates on GoFundMe, you likely already know this. But. I. Am. So. Excited. I had to post about it again.
The framing is—as far as I can tell from the pictures Mom sent—complete for the rest of the living space too.
I know this may not look like much now, but I look at it and all I see is the ability to take a shower again without fearing for my life. It took a brain tumor for me to understand what disability and accessibility really meant. But there’s a reason I posted about just the drain a little while ago. And it’s because now I know.
That’s why I talk about it so much. You don’t realize how abled the world is unless you are disabled or you know someone who is. And not, like, “Oh, my co-worker needs to use the elevator.” More like, “Holy shit. The plan is for wheelchair users just to park on the stairwell landing during a fire? People are OK with that? Seriously!?”
Related: I was watching a renovation on HGTV where the new homeowners wanted Chip and Jo to remove one of those walk-in bathtubs and I was screaming internally. “Those are so expensive! How do they know they won’t need that next week?!”
I don’t remember if the fixture got trashed or what. But I hope like hell it could be salvaged and donated to someone who needed it. Because the irony of disability is how little money you’re allowed to have and how much more everything you need costs. I’ve needed one for OVER. FIVE. YEARS. And that’s just counting from my official diagnosis.
(We all know diagnosis was an entire other thing. Unless you’re new here. In which case, welcome. Let me introduce you to my medical baggage.)
Finally, I just want to say I know what a privilege it is to have an accessible shower like this. And I am so grateful. If you have an opportunity to advocate for people like me, I hope you will. The upside is that what disabled people need is usually extra convenient for the abled world. (Ramps, ready-made meals, pre-sliced fruit. You get the idea.)
That’s all for now. Happy Wednesday. And thanks for being a part of this wild ride.
Apparently blogging about ice cream, ordering ice cream, and breaking my reply moratorium to talk ice cream with @fschmnn on Twitter makes the YouTube algorithm think it knows me. (OK, maybe it does.) Just got served this very punny scoop.
It’s worth noting I tried to get this flavor, but big box store was out.
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.
Par. Tay.
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.
Gosh!
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.
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.
Anyway….
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.
My MRI is in a couple hours, and I’m spending a lot of time inside my own head thinking about unpleasant things. Not even cancer related really.
I am simultaneously ready for this to be over and wishing it wouldn’t start. It’s a long MRI day. Technically two appointments, but it will all just feel like one long scan for the person inside the tube.
That’ll be me, by the way.
I do most appointments alone. Dan just drops me off because there’s no point in both of us getting on the elevator where someone will absolutely have their mask pulled under their chin.
Is it just me, or are noses obscene now?
It feels like the best choice two immunocompromised people can make, but I feel untethered. Mostly alone. Rollating down long, unfamiliar hallways while everything around me spins.
I’m carefully numb. I’m not scared of hospitalization. I just dread One More Thing.
When I think about people who can’t be bothered to properly mask in a hospital, I get depressed. So fuck them. I’m just going to be angry instead. It’s easier.
I’ve got a new T-shirt idea. I’ll design one that says. “I’m on Medicare. Every time I land in the hospital, Joe Biden raises gas prices. ” I bet I’d get my personal space back. Shoot, I might even get an elevator all to myself.
“But, Emily, that’s not at all how Medicare…”
Shhhhh.
I mean, who among us hasn’t handed a toddler an iPad?
