One of the things that I am realizing is that Dan was always in a rush to get me up off the floor when what I needed was for it to be okay that I was on the floor.
The bed became my safe space because if I was in bed, then maybe he would leave me alone. I thought letting him do things his way meant that his anxiety wouldn’t become my anxiety, but I was wrong. He’d come in and prod me raising my angst and priming me for another panic attack. He never had a good thing to say, and it hurt.
I know caregiving isn’t easy, but neither is being a patient. I told him we just weren’t compatible anymore. But even that was a fight I didn’t have energy for.
Living my life in bed all the time to avoid needing his help made me more anxious. I was taking up such a small space in my own home, and it was profoundly damaging to my physical and mental health.
What I wish I knew sooner was that I was making things harder for myself trying to appease him. As they say, I should have been putting the oxygen mask on myself first.
It feels foreign to me to be listened to now by my family. I would ask Dan for passive help like telling me “it’s going to be okay” or just listening to the way I wanted to handle things. But I was never given that agency and it did a lot of damage. Everyone now seems to be listening. It feels remarkably safe.
My panic attacks are so bad now though that they are stroke-like. But I’m getting better, and it is empowering to see how quickly I am getting better. I already feel like I’ve made huge progress and it’s only been a couple of days since Dan left for Las Vegas.
I can do hard things. As Carrie Newcomer sings “Impossible just takes a little more time.”
A few days ago I had a massive panic attack. Trying to think of something that would help me snap out of it, I asked Dan to “tell me you love me.”
The “I love you” I got back was so begrudgingly given that even in the midst of a panic attack I couldn’t help but roll my eyes and wonder how I could ever get back to bed.
Sensing that he made things worse, he tried again. It was slightly better, but not much.
This hurts so deeply, I can’t. I’ve written before about how I can’t cry, and I’m 99% sure it’s anxiety trying to protect me from myself, from my fear of abandonment.
When you’re disabled and your cancer caregiver is your spouse, it’s so hard. When your spouse thinks he knows best and you have a sordid medical history of people poo-pooing your every goddamn choice, it’s even harder.
Just had a panic attack so I think I’m hitting on something here.
These few short paragraphs have already taken me days to write.
In sixth grade science class, we were sitting at our assigned tables watching a video about Galápagos tortoises. Or we were supposed to be anyway.
Brad and I were playing football with one of those origami footballs. I don’t know which one of us folded it anymore, but we were giggling and having fun and not being studious in the least.
The origami football was lost to some classmates at another table when I attempted a field goal and missed colossally. Undeterred, Brad decided to make one of those origami fortune teller things next.
For the uninitiated, origami fortune tellers are little papercraft games where a player picks numbers, the folded paper is shuffled a few times, and then the player picks a random flap to open, revealing a fortune, or a joke, or whatever the maker decides to write.
For some reason, I got a feeling deep in my toes that Brad was into me, and he was going to use this game as a way to tell me. I looked across the table as he filled in the game with the requisite numbers and fortunes and became nervous.
Suddenly I was very interested in the video about Galápagos tortoises. I focused on the hundred-year-old creature as the narrator droned about evolutionary science. Even though I was into Brad too, I was, I don’t know, scared of my feelings or something.
Adolescence is weird. Leave me alone.
A couple of days later, curiosity overtook me. I had a chance to sneak the game from Brad’s desk and read the fortunes he’d written while he was out in the hallway. Seven of the eight fortunes he’d written were innocuous. Stuff like “this class is so boring” but one fortune said “I like you.”
So I was right.
Last night a fellow cancer survivor and I were chatting about edibles when he started sending me DMs. He was high. I was high. And his messages got vaguely suggestive. My self-talk is crappy enough that I sometimes miss more subtle cues because I don’t think anyone could have any interest in a woman with a brain tumor. But sometimes things finally register.
I was like “Oh shit, he’s about to send me dick pics.”
In his defense, he was not menacing or aggressive. Sometimes people with cancer need to feel good and feel alive. I don’t judge. Sexting folks halfway around the world though? Not my thing.
He was merely trying to gauge my interest, and I was suddenly 12 again not knowing how to simply be like, “Naw, dawg. Thanks though.” So I blocked him.
Cancer is weird. Leave me alone.
This morning I fell* trying to brush my teeth. The toothpaste was near the end of the tube. I looked down, trying to force out the last bits of Crest. However, I looked too far down, and my nystagmus kicked in.
The dizziness and struggle keeping the toothpaste on the brush led to imbalance and a panic attack. I tipped over when my muscles and my brain stopped communicating, but not without yelping a frightened, “Help!” on my way down.
Instead of being mean to myself about falling again, I stared at the bathroom ceiling and laughed about how hot I must look sprawled out on the cold tile floor.
It’s not my fault I’m a thirst trap. Leave me alone.
I had an oncology visit this morning. The MRI results came in Saturday and had me anxious. The report said the tumor showed slight growth. I don’t fear death, but I do dread me some chemo, and my mind was stuck running through all the prep and barfing in my future and internally I was screaming “no chemo!”
Basically, I was worried I’d worry and lose my progress with PT and anxiety if I had to endure treatment right now.
Turns out the radiologist was just thorough. My oncologist said it was compared to a 2022 MRI not the last one, and it wasn’t significantly bigger anyway. I don’t have to go back for an MRI for six months or see the oncologist until January.
[Insert giant exhale here.]
This was a very significant test of my progress handling anxiety. I learned two things: 1.) when things are hard, I need to up my dosage of weed, and 2.) I have made a shit-ton of progress recognizing and allowing panic attacks.
Yesterday was one of my best days in a long-ass time, and with an oncology appointment on the brink, that’s saying something.
I took a few stair steps getting to the car this morning. They weren’t as smooth as I would have liked, but I did them. That’s like twice now. Go me!
I think the AFO brace I was fitted for last week will help with that stair stuff too. My right ankle needs to feel secure so I can feel safer on my feet. That’s a few weeks out though. And I’ll keep doing what I can in the meantime while the brace is being fabricated.
That’s all. I finished the last of the apple cider gummies, so it’s time to pick a new edible to try. I’ve got pills, a snickerdoodle, and a drink mixer. Decisions, decisions!
I just cancelled tomorrow’s outpatient PT session, but I did make it to today’s CT scan and MRI.
I was thinking that although I wasn’t terribly excited about PT tomorrow, I could make it through. Then I got out of bed a wobbly mess and needed help pulling my pajama pants up, and the inner monologue went something like this:
You are not seriously going to do PT at eight o’clock in the morning, are you?
Well, when you put it like that.
And so I signed into MyChart. My next session is scheduled for Tuesday.
The scans today took so much out of me when I was already moving around hunched over. I think my spine or neck is misaligned. So the car ride, the transferring, the IV contrast, the heat—I think all of it whittled away at my resolve.
Pushing through stuff I have no business attempting sets me up for physical failures that lead to negative self-talk that lead to anxiety spirals. There are times to step outside of my comfort zone, but tomorrow morning doesn’t feel like one. So I’m being nice to myself and taking the day off from appointments. Especially ones where physical exertion is the entire point.
Tomorrow will be for watching Murderbot and maybe some writing.
Speaking of writing, I filled out my CT and MRI forms using my left hand. It’s much easier to write nearly without the time crunch and with a writing table angled to fit me comfortably. The arms of my wheelchair are a nuisance. But it was legible. It need only be legible.
One thing I need to give myself credit for before I take a gummy and try to relax: I opened my eyes for thirty seconds with my head pinned down inside the MRI today. I probably could have gone longer, it just seemed unwise to push it when I needed to be still.
I didn’t go outside today, but I was outside for all of five minutes yesterday getting to and leaving PT, and I feel like I’m still experiencing heat exhaustion.
Heat and this anxiety disorder are partners in crime. I am better today than yesterday, but still experiencing weakness. Case in point: I exhausted myself just trying to pull my pants up because my right foot was standing on them and I couldn’t move it out of my own way.
The good news is I feel much less anxiety seeping out of Dan’s pores. I think the email I sent the other night might have registered. I don’t know for sure, because he still hasn’t responded to it directly, but the vibes are better. I’m not soaking up his drippy angst like a crusty, dried out sponge.
I can work through my shit, or I can deflect his. But hard as I try, I cannot do both.
I’ve always been clearer in writing than in spoken word. The physical toll of having generalized anxiety has taken the strength of my voice on top of that innate deficiency. So my takeaway here is to just send emails from here on out. I get way better results.
In the early aughts, I had a boss that was like, “Just email me.” Goddamn delight to work for, that fellow introvert. He’d put on Sarah McLaughlin CDs and we wouldn’t speak for hours at a time. Sadly, it wasn’t enough to make up for the sheer chaos caused by everyone else. I was gone in six months.
When I was out to lunch one day the co-worker I shared an office with was like, “He was looking for a form on your desk and saw your resumé. I think his exact words were, ‘Oh shit.'”
It was good to feel appreciated, but not so good I wanted to stay.
And that’s the thing about me. I know myself pretty well, nope right out situations when the stress becomes overwhelming. But with a brain tumor in my head, there’s nowhere to nope to.
I have to deal with it and all the stress it generates. And that’s why when other people make me feel like I am cancer, as opposed to having cancer, I crank up the cranky to eleventy bajillion.
But Dan gave me a hug I didn’t have to request, and the Crank Monster has been quieted.
As a writer it’s a special kind of disabling to not have the right words to communicate how profoundly impairing it is to have an anxiety disorder.
Not being able to explain myself is a very real fear of mine. Mostly because of medical trauma thrust on me by lazy-ass doctors who wouldn’t listen and made me feel like I wasn’t being clear.
The PT at outpatient today knew anxiety, though, and she explained things that I thought I’d conveyed a hundred times before to Dan.
But somehow when a medical pro is explaining what’s going on he believes it. I don’t think he does it on purpose—if I did this relationship would have ended long ago because I have no tolerance for wilful mistreatment—but Jesus H. Christ on a Bike! Being doubted about my own experience makes me feel like shit.
Like when you’re a woman in a meeting and someone with a nutsack repeats what you just said but suddenly everyone at the table understands because it came from someone with a nutsack.
I’VE SAID WHAT THE PT JUST SAID HALF A DOZEN TIMES IN THE PAST COUPLE OF MONTHS, AND I GOT NOTHING FROM YOU, I thought.
Doubt about my experiential observation of symptoms is why it took me two and a half years to get a diagnosis. It’s kind of a big deal.
But I’m too tired to rehash all that right now.
Bottom line is this: Dan told the PT he thinks I’d benefit from restoration of confidence. It’s true in many ways. But also? I don’t know that I’m not the problem here, and that has nothing to do with my weak hip flexors.
Believe me, jerkface. Understand that my confidence wouldn’t be shaken if I weren’t doubted all the motherfucking time.
My PT seems great. I am not frustrated with her at all. I think she will really help me. I just need to vent because this gaslighting stuff makes me feel like they’ve been voting on a new pope in my ears for 11 years.
The other night while unable to sleep, I composed an email as Dan snored. It was my best effort to get stuff out without feeling like I had thirty seconds to explain myself before he stomped away in a man-baby huff.
I don’t even feel like what I have to say is all that bad, but he is so avoidant of anything remotely touchy-feely these days. I mean, we’re all like that by nature to a certain extent, and it takes self-reflection to overcome the default of being protective and invulnerable. But his dissociation has been off the charts.
He didn’t mention the email or its contents so I asked bluntly, “Did you get the email I wrote last night?”
“Yeah,” he said. “I read it this morning.”
Folks, I don’t know what he thinks about any of it. That’s verbatim all he said. But I’ll give you my take, because that’s what I do here.
I feel like he has been blaming me for a very long time for expecting too much of him when he was the one expecting too much of himself. I was unfairly being punished, because he wasn’t willing to do a modicum of introspection.
Quite frankly, I am sympathetic to the ways bullshit societal messages get sewn into our security blankets. That doesn’t mean you can make me feel like shit without pushback, though.
I would try to thank Dan for his help, to show him he was appreciated, and he’d get grouchy. Eventually everything I asked for wore me down to the point asking made me panic. Which stuck me in freeze mode and worsened my disability. Which meant I had to ask for more help.
You see the problem?
I’d try to get him to say “no” when he needed a break. He’d get mad at me. I’d try to read his mind when he was brain tired, I’d get it wrong. I’d say something innocuous and he’d play devil’s advocate because he didn’t want to agree with me about anything.
I didn’t handle it in stride.
I was spinning my wheels. It was emotionally exhausting and not fucking helping me in any way to spend energy I didn’t have on something I had come to learn would be a pointless endeavor.
Anyway, I think I stemmed the blame-bleeding for the moment. Time will tell when and if we fully recover. What matters to me most as I write this post is that I said what I needed to. What he chooses is not my problem, and—at least for now—the silent hostility is gone. I feel like I can process emotional junk again.
That’s enough.
Donate to Emily’s brain cancer GoFundMe campaign here.
I want good things to stay. Why does that feel like it’s too much to ask?
I got a letter in the mail saying that my primary doctor is leaving and they’ve assigned me a new doctor a couple of towns over.
I’m not just sad. I’m heartbroken. Again. I want to sob into a package of Oreos. This is not helping my abandonment issues or anxiety at all. Why can’t I have a doctor who helps me?
Why?
Dr. J has done so much for me, including switching me to Lexapro, hearing me loud and clear when I said no mammograms, encouraging me to try PT, scraping me up off the parking lot, and telling me at every visit to do something fun every day.
As opposed to the absolute cunt before her that berated me in writing for not making appointments and getting the labs she wanted.
My oncologist is fine. A good doctor and a stable fixture, but it’s complicated because his existence reminds me I have cancer. He can’t make the brain tumor go away. He probably looks at me and sees a time bomb.
Even though I don’t see that in the mirror, lots of people reflect that pain onto me. It’s excruciating.
There’s an episode of Glee I carry around in my head where Jane Lynch’s character, Sue Sylvester, is confronted about treating a cheerleader with Down’s Syndrome cruelly.
She replies by saying she has a sister (I think) with Down’s and all she wants is for people to treat her like they treat everyone else. Bottom line: Lynch is as an asshole to everyone.
Can’t argue with that logic.
I want to be treated like everyone else too. Healthy people could all die at any moment too. Stop pretending they’re different than me. I can still have a heart attack or get hit by a bus. Treat me like that.
Treat me with care, not caution.
So I must start from scratch with a new patient appointment. And my medical history is complicated. And the brain fog. And the anxiety. My last “get to know you” appointment was two hours long.
I grew up in Tornado Alley. One day, when I was just a Little, a tornado ripped a towering willow tree up from our back yard.
It landed on our back patio, the crown of the tree a fraction of an inch from our sliding glass door. The roots were pulled up and there was a hole in the earth where it once lived—that is, before the men came with their chainsaws and dissected it.
An anxious child of two parents who had seen some shit, they reasonably did not understand my subsequent fear of storms.
When one very expectedly came around again, and I kept them awake all night crying, they locked me out of their bedroom. I cried myself to sleep on the plush hallway carpet outside their door.
They were exhausted. Of course they did what they had to do. But I don’t think I learned not to be afraid of storms. I think I learned that if I bothered anyone, they would abandon me. Best not to cry when anyone can see.
***
The night before my craniotomy at Barnes, the neurosurgeon came to tell me what to expect in the morning. Oh, by the way, there was the usual risk of death with general anesthesia. He asked me to sign the consent form. The standard surgery spiel with bonus “we might cause brain damage while we’re in there” stuff.
Dan was in the hospital cafeteria getting something to eat.
It was late enough that the lights were out so my roommate without a pacreas was already sleeping. The surgeon and I talked pretty quietly. I could see where to sign the form because of the dim light over my bed and the fluorescent glow coming from the hallway.
“Is this going to happen for real?” I asked. I’d been crying in a hospital bed the day before for about an hour and was dubious. They had pushed me to the side of the waiting room for a spinal tap, but the doctor assigned to do the tapping refused* because I had a brain tumor and he thought it was risky.
I was in the waiting room in a hospital gown alone while outpatients listened for their name to be called, loved ones dutifully standing by. They were in street clothes. Some were holding hands.
I was a snotty display of fear, as it turned out, for nothing because the doctor refused.
I don’t blame anyone there for what happened. Sometimes things suck. But I was traumatized and wondering how much more public trauma I should expect.
“I promise you, it’ll happen,” he said without any detectable emotion.
“OK. All I ask is that you explain everything to my husband when he comes back to the room later. I don’t think I will remember everything, and he might have questions.”
***
After Dan had a chance to speak with the doctor, I asked him if he’d stay until I fell asleep. He said he really needed to get home and get some sleep himself.
Of course, I’d be anesthetized. He’d be awake and a nervous wreck.
He hugged me and left.
I have written extensively about the things that made me angry, but not so much about the things that broke my heart and made me feel abandoned.
I didn’t cry that night. Because big girls don’t cry.
*Two residents did it the next day instead. I was promised Xanax, which I didn’t get. And Dan will tell you just how slippery spinal fluid is.
