A few years ago, a friend texted me that her marriage was a shitshow thanks to cancer.
It wasn’t mean or backstabby stuff, just two people too tired to endure the strain that cancer puts on relationships.
I didn’t understand, but I listened. Some months later, she passed away. I don’t know how her husband felt about her death, but I was in denial that she was gone.
There are lots of reasons I wish she was still around. One of them is simply to say I get it now.
I’ve written about the horrible cancer stuff for years. The crappy doctors, the insurance, the craniotomy, the chemo, the radiation, the IBS, the puking, so why not this too?
I’ve tried every way I know to talk to Dan about this brain cancer stuff, and the anxiety in particular, but when I go there, he leaves the room. Literally, physically walks away.
I’ve asked him to watch videos that sum up what I’ve learned about anxiety and panic attacks—because I struggle to explain things verbally on my best days—but he won’t even do that.
I’m so tired.
I know he is too. He’s been sick for decades and didn’t ask for his wife to be disabled and needy. He checks out, dissociates, and I have no fucking clue how to deal with that except to borrow a line from Billy Joel and acknowledge that he gets to make decisions too.
And play video games. And fuss over the cats. And watch Stargate reruns.
I am not mad about it. I understand this is hard for him. But I am hurt and lonely. He does every little thing I ask for, but I want to be well enough to do the little things. I want a break from this overwhelming emotional labor.
I think that some might think it cruel to write about my caregiver on my blog. Maybe it is. Or maybe I’m overthinking things again. However, there are two points I want to make up front to rationalize doing this: 1.) I have tried many, many times over the last eight years to have these conversations face-to-face with Dan, but I can’t make him talk to me, and 2.) he is not in the habit of reading the shit I write anyway.
Because I can’t afford therapy and it’s not feasible for other reasons, I blog. Writing is the one thing I haven’t lost, so I cling to it. Perhaps a little too desperately.
Anyway, I don’t think Dan is trying to hurt me, he just does. In fact, from what I have been able to deduce I think it’s his fear of hurting me and his unwillingness to deal with sad stuff that shuts him down. If I’m wrong about that, it’s not my fault.
He doesn’t talk about it. All I can do is guess that his brain bots are telling him depressing bullshit about himself and he’s eating it up like a Boomer watching Fox News (Fox Propaganda more like).
Dan and I aren’t really on speaking terms at the moment because I tried to tell him today that I need him to unload his burdens somewhere else because I can’t fix it. It triggers my panic attacks when he just brain dumps about how terrible everything is.
And he went outside for a smoke after saying something about how he’s not allowed to talk about his problems. I had to finish my thoughts by text message. He hasn’t spoken to me since except to ask about dinner.
For the record, self, you did not choose to have a Grade 2 astrocytoma. And you did not choose slow-growing mental exhaustion.
I could spend the rest of my life—decades maybe—in this hell.
I didn’t have the best week. Of four appointments this week, I had to cancel four. An MRI, a CT, a dentist appointment, and a primary doctor appointment. And because those scans didn’t happen, my oncology appointment next week was moved to next month. All of this finagling of my medical calendar is fallout from panic attacks. They literally immobilize me, and I can’t do what I can’t do.
After I flopped and flailed trying to sit up in bed at lunch time, I gave up, and decided nothing was happening today. I figured I’d eat some of Dan’s birthday cake and watch Murderbot to console myself.
All the rescheduling feels heavy, but particularly the appointment with my primary doctor today. I don’t just feel like I’m failing myself by not being perfect, but also because it delays my getting a foot brace. I really, really want that foot brace.
I want to walk outside on a sidewalk, and I believe the brace will help me unlock that ability.
Physical therapy has helped me a lot. It has given me hope that I can be much more independent again, but it hasn’t exactly made me patient. This impatience is deeply embedded in my personality. I was the kid sister who learned to read and write because my brothers could. I wanted to do anything they could, just without waiting until I was their age.
On Wednesday we drove all the way to the hospital in O’Fallon for my regularly ordered imaging. After an ORDEAL™ getting into the car, I cancelled in the stinking parking lot, convinced I was a total failure and bummed I put everyone (OK, just me) through all that for nothing and inconsolable that I’d have to try again later. With no promise that any future attempt would be fruitful either.
That night I did that breath-catching sobby thing that toddlers do until I fell asleep. Hyperventilating, basically. Very few actual tears though, because panic attacks get me stuck in a prolonged freeze response. There’s no actual crying when your brain is convinced you’re dying. So it just gets lodged in there.
The more you know. 🌠
i haven’t had a real cry since my dad died four years ago. Which is very not me. I’m an out-and-proud crier. A sympathy crier. A happy crier. An overwhelmed crier. A proud crier. Time was you could boil pasta in my tears.
Odd as it sounds, dry sobbing is an improvement. I get the sense I’m climbing up a scorching metal slide with my feet buttered, and eventually I will reach the summit where the waterworks will go nuts. Then I’ll have all of me (if not my body) back in working order.
I never really understood emotional repression of this magnitude before now. I am the kind of person who just leans in, usually when I’m alone. I am never alone now. I don’t let myself work through anything because I’m worrying my sadness will be contagious and so then I repress to save others from heartache and in the process fuck myself up.
God, this fucking cancer. The tumor isn’t half as problematic as knowing I have one.
But being unable to ugly cry and feel my feels feels awful. I want to purge it all. Why is that so hard? It’s like when my stomach turns sour and I start fantasizing about a good vomit.
Yes, that’s a Napoleon Dynamite reference. Yes, I’m one of like three people on the planet who thinks that movie is hilarious.
Midwesterners are traditionallly not very good at goodbyes. The Midwestern Goodbye™ is a thing where someone doesn’t leave until at least half an hour after they’ve announced their intention to leave.
In some cases, it might be a result of heartbreaking feelings about leaving. In other cases, someone might feel it impolite to tear the bandage off too quickly. Most of the time, though, I think it’s just customary.
There are always exceptions to the rule. Medical appointments, or appointments in general, spring to mind. In an effort not to make someone late for the next thing, goodbyes are wrapped up pretty painlessly.
I mostly feel like that’s how it should be, everyone respectful of everyone’s time.
But today was my last session with Pedro (not his real name) and the goodbye wasn’t Midwestern enough for me because I knew he had to get to the day’s next patient.
If I’m honest, a lot of that angsty sadness has to do with how I experience anxiety right now. I’ll be moving on to outpatient PT just up the road, and I have to leave my safe space for that. Both physically and emotionally.
Credit where it’s due, Pedro was a safe place.
I think back to the time when I did the Couch to 5k and ended up with pain in my right hip and leg.
The sports medicine doctor didn’t see anything glaring on my X-ray, and recommended I start PT to strengthen that leg and fix my minor gait issues. I dutifully obeyed, and the PT I saw at the outpatient clinic noticed my IT band was tight.
He did the thing where he tried to get my muscles to let go by scraping the outside of my thigh from hip to knee with his forearm. I screamed out in excruciating pain, and everyone there—about 20 people—stared at me as I curled up in the fetal position on the table.
I hate being the center of attention in a group.
I also hate feeling weak.
To be fair to that PT, none of us knew what we didn’t know.
I didn’t cry that day because I didn’t want to cause a scene, but I was weeping on the inside.
It was traumatic, the bolt of hurt that shot up the offending nerve and lodged for years in my brain. As the incubator of a slow-growing astrocytoma, there was probably some tumor stuff going on already. There was absolutely repressed anxiety.
In contrast, the first time Pedro stretched my right foot I said, “That feels good.” I was shocked, and because I was emotionally a little raw, I was also surprised I was surprised. My shock probably registered on my face. I have a hard time controlling my expressions now that I’m working on feeling more feels.
That’s not a bad thing, just not historically a thing I do. I’m still working out the kinks.
Anyway, for something like eight weeks, Pedro has been helping me regain the muscle strength I thought was lost forever. And while it’s very empowering to stand at the sink and brush my teeth again, it’s a million times more beautiful to feel the fog of depression clearing in such a profound way. In hindsight I can see how depressed I really was.
I’m independent to a fault, but need help with so much. That’s left a mark.
Naturally I’m a little scared about what physical therapy will be like without Pedro. A little scared I’ll backslide. That I’ll end up in the care of a professional asshole and flip out.
Even Dan was like, “Can you have another surgery or something so Pedro can come back?”
I didn’t have a chance to tell Pedro all of this because there were other patients to be seen and there wasn’t really time for that Midwestern Goodbye.
I’d have probably been weird and got teary anyway because at the end of sessions I’m running on fumes and emotionally as raw as uncooked ground beef.
Odds are good that the Midwestern Hugger in me would have forgotten that some people* don’t want to be squeezed and you don’t always know who they are.
Bottom line is I’m team Pedro. When medical procedures lurk in my future**, I will remind my anxiety and depression that Pedro offers me his protection.
* Like the doctor who robotically puts a hand on your shoulder. You know the one. The one that says “I was taught that touch conveys empathy in medical school, but I maintain detached indifference. This gesture is a pointless ritual.”
** Next opportunity to practice being chill are the routine MRI and CT on June 4th. So scanxiety can suck it.
Sometimes I feel sorry for myself and eat Oreos. Today is one of those days. Relative to recent feelings of accomplishment, today sucks. I know that comparison is the proverbial thief of joy, but that doesn’t mean my brain can stop comparing.
I want every day to be a little better than the one before, but that’s not how it works. And the recent weather changes, what with the storms and tornadoes and all, have landed me in the land of elevated pain levels. Which makes me not want to move. Which depresses me.
Shoves Oreo in mouth.
Part of my problem is that I’m fundraising again. I don’t have words to describe how exhausting and demoralizing it is to need money to live while asshat billionaires have asshat far-from-billionaires convinced I’m the useless eater.
At times like this my mind goes back to the insurance company peon who said I didn’t deserve health insurance (and therefore healthcare). I know it’s bullshit—that she’s the reprehensible one—but that doesn’t mean that I’m unaffected. And that doesn’t mean there aren’t days when the bastards get me down.
I hope one day the brain tumor cells I donated to science save someone she loves. Partly because everyone deserves a life free of cancer, but mostly for spite. Because fuck her for living rent free in my head. The astrocytoma takes up enough space.
Eats another Oreo.
Another thing: some days I feel like an untouchable. Though I have plenty of evidence to the contrary, being 8 years out from diagnosis leaves the brain to wonder why I’m not dead yet. And if I wonder that, what must everyone else be wondering? Of course I don’t know, but my brain is very good at imagining people are tired of me existing.
Maybe it’s survivor’s guilt. If so, it’s more self-centered than I thought.
Maybe this Oreo will help.
The forecast says the barometric pressure should stabilize soon, so I hope my complex migraine will fuck off with the storms. It makes me crave sugar, and I feel like everything inside my skin is three sizes too big. I feel like the undersides of the skin of my left side have suffered rug-burn.
It’ll subside, along with the tongue swelling caused by black pepper and the oversensitivity to light and fragrance when the inflammation recedes. But until then, I’ll just have another Oreo.
I started physical therapy and occupational therapy this week, and I’m so excited. I’ve been in this bed far too much for far too long.
I’m screaming to get out and about now that it’s Spring, so I estimate the timing is perfect.
Basically, I suffer from a lack of confidence getting around after falling and my anxiety about falls has led to me being inactive and depressed, and all of that leads to deconditioning which fuels more anxiety because I don’t trust my muscles.
It’s a vicious cycle that I’m eager to break.
So the plan is that I will have in-home therapy 4 days a week for six weeks, 2 alternating days of PT and OT Monday through Thursday.
I had my first full session of PT on Friday this week. It’s all happening much quicker than estimated, which is great because there hasn’t been a lot of time for me to psych myself out by overthinking and feeding the anxiety monster.
For my first goal, I’d like to be able to brush my teeth standing up again. (Yes, it’s gotten that bad.) To achieve that takes time. Right now my homework, which I have been completing dutifully, is to sit up for 2 hours a day.
It may not sound like much but let me tell you it’s a lot for this disabled human. I hurt in an accomplished way though, and I’m determined to be able to do more for myself. Eventually.
After just one day of PT and a couple days of homework, I feel kind of amazing. My right foot has been turned inward and immobile for a year, and I’m hyperextending my knees and leaning forward to compensate for the imbalance.
Just having someone tell me that has made me a lot more mindful of how I can correct it.
In other news, I also got a fantastic mug this week from a friend. Its from Little Eden Pottery.
My left handed writing practice continues and I got a new stencil for making Zentangles that I will write about as soon as I am able.
That’s all for now. Hope you’re having a great weekend.
As the anxiety subsides, I’m feeling more and more like doing stuff. Here on the blog, and in real life. So I’m circling the block, looking for a place to park the struggle bus. More on that in a minute. First, how I’m doing:
I’ve been taking Lexapro (escitalopram) 5mg for a little over three weeks now, and it’s working in a cascading fashion. One good thing clears the path for another good thing, and I’m here for it! The most significant good thing I notice is that I’m sleeping so much better. I was depressed for sure, likely due to the constant anxious thinking and lack of sleep.
With anxiety down, I don’t buzz with panic as soon as I turn the lights off. Instead I feel sleepy. I have weird SSRI dreams*, and I sleep through the night (when my bladder allows, of course). Even Mom was like, “How’s that Lexapro working out for you?”
Yes, folks, I have reached the portion of the anxiety deprogramming where other people are noticing.
I’ve started virtual EMDR therapy** and continue to use the Unwinding Anxiety app. Major muscles that were once in perpetual spastic contraction have started twitching. (Once upon a time, I would have considered the twitching an annoyance, but now it feels so good.) Overall I feel like things are unspooling nicely. I still have panic attacks far more frequently than I’d like, but I don’t feel helpless about them.
With my new moments of mental clarity, I have decided that I want to make this blog and website more for me. I love you all and enjoy thinking about what my audience wants as I was trained, but I need an outlet for my stress and to give myself permission to play. It may not be noticeable to you, but it is a seismic shift in how I think about what I do here***.
So without further ado, here’s what to expect going forward:
transitioning my memoir chapters to personal blog essays, published at regular intervals
functional and aesthetic updates to the site
continued guest posts on related topics
continued day-in-the-life, review, and chronic illness ramblings
Earlier this week I took a normie shower (as opposed to bathing with cleansing cloths) and a few hours later I was mulling over how it went and the progress I was making when I realized the water didn’t feel like razors cutting me open. I thought to myself, “That was so normal I didn’t even notice how unpainfully normal it was!”
I’m amazed at myself. People, including me, who thought I had strength and resilience when I was diagnosed with cancer should be in awe right now. GAD and panic attacks are the hardest things I’ve endured to date. They make the existential crisis of living with an inoperable brain stem tumor seem trivial. When people tell you they deal with anxiety, I hope you’ll be the kindest person you know how to be. TGIF, kids!
* I had a dream the other night that Hugh Grant was making egg souflé in a spinning metal mixing bowl with sizzling hot oil on the living room carpet of my old house and in the dream I kept thinking to myself, “That’s not how you make souflé.”
** I have thoughts. I’ll probably blog about them in a future post. For now I will say that I thought EMDR was just woo but it’s not, and it’s helping.
*** For example, I remember (wrongly) thinking to myself many years ago, nobody wants to read about good things. I need to make this blog all struggle bus, all the time.
I’m sipping probiotic tea after an IBS flare that hurt my abdomen significantly enough to launch me into another panic attack.
The tunnel vision. The pre-syncope stars. The pounding heart. The muscles that just will not to the point I couldn’t even flush the toilet and struggled to pull my pants up. Struggled as in the physical exertion feels infinitely more exhausting than running my first 5k did.
It would be humiliating, the inability to flush a toilet, if I could think about what was happening in the moment, but that’s the thing: the thinking part of my brain (the prefrontal cortex) just relinquishes all its power to the lizard brain (the amygdala) when I enter panic mode. So I look back on the event with shame, even though there’s not a damn thing I can do until someone invents a time machine.
Everything I’ve read assures me that shutdown is one of the ways it’s supposed to work in the the event of actual, life-threatening danger. My brain is not broken, just overwhelmed. The “disordered” part of having an anxiety disorder (and it’s looking more and more like panic disorder too) is that my brain has deemed pretty much everything anxiety- and panic-worthy.
For years I’ve tried to sort out why I’ve had an IBS flare when one occurs and then spiraled into overthinking.
Did I eat too much fat? Did I eat too much sugar? Did the weather get the best of me? Did I get too much sun? Did taking my medicine without food trigger an episode? Am I just too fat and unhealthy? Is my body broken beyond repair? Is this my life now? Will I never have another good day?
What psychiatrist Judson Brewer writes is that the what matters more than the why. Searching for the reason why is an attempt to rewrite the past and make a better one.
But that’s not possible. So I’m spinning my wheels trying to think of what I did to myself when I should be focusing on what anxiety feels like so that my brain can reform its habit loops based on the positive and negative feedback it notices.
I am still so very much a work in progress, by the way.
This anxiety disorder didn’t happen overnight. In fact, I think it likely stems from being dismissed by doctors, pushing for answers, and then getting the brain tumor diagnosis. For a decade now, I’ve felt like if I don’t investigate the problems myself, no one will. (If you’ve been following this blog for a while that might be obvious.)
I’ve spent years starting from the place of “I’ll probably die because no one who can help gives a shit.” Talk about anxiety-inducing. “I’m an English major! I didn’t go to med school!”
That negative assumption is not true, but I haven’t convinced my lizard brain that doctors aren’t inherently shitheads.
Anyway, I am reminding myself that getting better takes time just like developing GAD did. I’m trying to be patient with myself. Trying to remember that when I have panic attacks I’m not regressing, not starting over.
It’s like pressing pause on a movie to get a snack from the kitchen. I don’t need to start the whole thing over from the beginning. So I’ll sip this tea and spend a few moments reflecting on the progress I made.
Because all is not lost. Because I can do this hard thing. Because I have help.
I’ve been on 5mg Lexapro for GAD and panic attacks less than 12 hours—that’s right, one pill—and I feel like I have myself back. I still plan to use edibles and cannabutter to make life easier. Quality of life mattes.
I’m no stranger to antidepressants. There was Cymbalta. Then there was nortriptyline. Then amitriptyline. All prescribed off-label for pain. The only one of those I really, truly despised was Cymbalta. The other two just made me feel foggy. Not ideal, but not a major threat.
But Cymbalta. Whooooo. That hit different and in terrible ways.
If you’ve been one of my pocket friends since before the brain tumor, you know the story. If you haven’t, I’ll save you the clicks. The TL;DR is that Cymbalta made me feel like not me and going off it made me violently dizzy and nauseated, and I absolutely hated every moment I was on it.
…I’m taking a break to eat a pint of gelato. BRB.
…aaaand polished that sucker off in record time. I’m back, baby! Not giving IBS a second thought when ice cream is involved. That’s authentic Emily, right there.
I missed her.
Now, I’ve considered that it’s too early to say Lexapro is working. My biggest problem with that is I have been quantifiably miserable, immobile, anxious, and swimming in neuropathy for about two years and I swore to myself if I ever felt relief I would bask in it.
This is me basking.
My primary doctor said it could take up to 8 weeks for Lexapro to be therapeutic. So I don’t know if if I’m dealing with the effects of my hypersensitivity to drugs or if I was in such a horrible state of constant panic that small reductions in brain activity feel like huge-ass miracles.
I don’t really care about the biological mechanism. It’s like the doctors say: We don’t know why it works; it just does.
I never thought I’d feel like I inhabited my brain again, so I’m going to revel unapologetically. Because freedom from the constant choke hold of my neck muscles, the grainy vision, and the paralysis might be fleeting.
Yesterday was full of hard things. Chiefly, I had a follow-up appointment with my primary doctor in which we discussed my hatred of Xanax (just too groggifying for this already brain-fogged princess) and she prescribed Lexapro.
I’m at a point in my anxiety work that I think I can take a new medicine without it necessarily triggering a panic attack. I mean, it may still lead to one, but it’s not a given. Panic attacks don’t last as long anymore anyway, and I feel like the benefits of an assist in this mental health challenge outweigh any trigger risks.
Plus, it’s entirely unreasonable for me to avoid taking new meds when I have cancer. Got to jump back in at some point. Might as well be now.
With each new day, I am discovering just how physical panic and anxiety are. Everything—down to my PEM, buzzing sensations, and the feeling I am being choked out—improves when the anxiety and panic attacks subside. My blood pressure is down.
I’m still at a point where the improvements are for the most not outwardly noticeable. But I feel the difference. (Like when I’d exercise but no one noticed because my weight didn’t change.)
I know things are different, and that’s enough.
The one exception might be that IBS symptoms are much better. I’ve been reclusive, trying not to get the flu and various other germs, so Dan might be the only one who sees this change. And he may only be aware because when he brought up how slowly we’re going through toilet paper, I mentioned that’s probably got something to do with IBS flares being fewer and farther between.
I still worry too much what other people go through because of me, but I’m a work in progress. That’ll ease up too.
In the meantime, I will remember to commend myself for taking this on with all the doubt I have internalized over the years. I thought brain cancer was going to be the hard thing. Ha!
Worry is my Anxiety Skinner Box. If you don’t know what I mean by Skinner Box, watch this:
The first time Skinner Box conditioning found me in a significant way was probably in 2016. I got worked up about my undiagnosis-turned-misdiagnosis, seemingly unending appointments with unreasonable doctors, and credited myself and my worry for a brain tumor discovery that took too damn long.
As a result, my lizard brain rationalized that health anxiety led to an eventually-accurate diagnosis and saved my life. My rational brain was like, “Yeah, that tracks,” and my collective brain automatically behaved like that non-zero chance was a certainty for everything in perpetuity because it likes the convenience of patterns (also known as jumping to conclusions). Et voila. Brain damage done.
Then in 2022, some unusual gray matter showed up on a follow-up MRI. That’s when I felt the physical-ness of anxiety all the way in my bones. There was a chance the cancer was doing its thing again, and I was so scared I thought I’d puke.
I went back on Temodar (chemo) after I’d had a horrible, sort-of-allergic, near-death reaction to it. (An allergist thought maybe it was DRESS but was noncommittal because there wasn’t much literature to back her up.*) That trauma unfolded during adjuvant treatment in 2017. So in 2022, I was not only scared of the inoperable tumor but also the prescribed treatment. The blue-lipped, no circulation style PTSD kicked in hard. So hard.**
I was not in a good place, mentally or otherwise. And instead of being scared out loud in a public way, I was hella scared in my head and fucking pissed off to boot.
Not that I didn’t have very good reasons to be angry given that Nazis and fascism were en vogue then too, but that unending cycle of worried outrage paired with routine cancer shit was eating me alive.
As it turned out, the possible tumor growth that showed in imaging was likely necrosis from radiation therapy in 2017.
Thing is, oncologists don’t really know what’s necrosis and what’s cancer on a scan. (And I was a hard “no” on another biopsy.) With brain stem tumors, even slow-growing ones like the uninvited guest in my head, the general consensus is: don’t fuck around, and then find out. That is, treat it like it’s cancer growth; wait and see if that was the case.
So even though the ireggularity appeared to have been necrosis, I got to relive some chemo trauma anyway … as a treat. So my brain basically wrote the following loop and generalized it for subsequent use:
scan > worry > not cancer
Fucking Brain Clippy was then like “Hey, looks like worry helped this one time. Want me to help you with generalized anxiety disorder?” But it wasn’t a question so much as a directive.
Naturally (literally “naturally”, not sarcastically “naturally”) I worried about everything.
And then I had eleventy bajillion more cancer scares in 2024, and between the possible brain tumor reboot, the giant lymph nodes, and the lung nodule, a pattern was firmly established: worry and it probably won’t be more cancer.
It’s so fucked up.
Anyway, bottom line for the uninitiated (those who haven’t dealt with GAD or read something like Unwinding Anxiety) is that with anxiety attacks, my primitive brain is more efficient than it is helpful. Automatically jumping to conclusions that are very hard for my thinking brain to undo in order to, I dunno, save itself from being eaten by saber tooth tigers. (Or ravaged by face-eating leopards?)
But the sooner I understand my lizard brain is calling the shots, the sooner I recognize the Anxiety Skinner Box and the shorter the anxiety attacks.
I guess early detection is for more than mammograms and colonoscopies. The more you know and all that jazz.
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* The joys of rare cancers and diseases are that no one is sure about, well, anything really. Those that are confident? Ninety-nine percent chance they’re just arrogant AF.
** Holy shit. The drug reaction I recounted in that linked post is JUST like my anxiety response. Down to the muffled sounds and the inability to walk. I hadn’t made the connection on that level until now. The biggest difference is the stress registers further along in my GI tract now.
