It’s Not Good—But It’s a Good Story. I Think.

 If you were to ask me what the most traumatic memories from the last two years are, they would undoubtedly include memories of seizures and rehab appointments. The seizures were so wildly unpredictable that I constantly felt as if I were on the edge of a cliff. And not just on the edge of a cliff, but specifically on a volcanic cliff where I might not only fall off, but the volcano might simultaneously erupt, blowing everything to bits with hot lava and blinding ash. Even the last few routine appointments with my seizure doctor were invariably filled with tears as I talked about how emotional those memories were for me. Every time I had a seizure, the clock would reset on when I could drive again, pushing independence farther and farther away.

In a similarly emotional vein, rehab appointments were where I was consistently confronted grief over physical and cognitive loss, realizing that my body and brain were no longer what they once had been. I remember the occupational therapist handing me a one-pound dumbbell—one pound—to see if I could hold it in my left hand and rotate it at the wrist. I couldn’t do it. The speech therapist handed me a worksheet where I was supposed to draw hands on a clock according to the time listed. I got them wrong. I would leave sessions exhausted, ready to go home and sleep.

Rehab has long been in the rearview mirror, and I have now moved over to a gym setting. I’m still confronted by loss there, but not with the emotional force that rehab carried. I suspect the left side of my body will always be weak and uncoordinated, particularly my hand and arm. I’m still coming to terms with that in some ways. I can now draw hands on a clock, although mental math is a bit of a challenge. Perhaps the government did me a favor by eliminating the penny, and businesses are now rounding to the closest five cents. This means less brain drain for me when trying to make change at restaurants and such.

As for the seizures, as painful as the memories are, I at least haven’t experienced any since May 2024, so not quite two years. Time and space have largely eased the fears and anticipation I used to have about the prospect of them recurring. In a mutual decision with my seizure doctor in early February, we agreed that it would be okay to stop taking one of the two seizure medications I was on. I had no reason to think the decision would not go well, and neither did my doctor. I would cut the dosage in half for one month and then stop it altogether. My general line of thinking when it comes to medications and supplements is that I don’t want to be on them unless they are necessary.

I took my last dose of that medication this past Sunday night. It’s an extended-release version, and I only take it once a day, so technically my body won’t notice that it’s without that medication until sometime after Monday night.

After nearly two years, I didn’t even make it a full forty-eight hours (counting from Monday night) without having a seizure.
 
And boy, was it a whopper. And boy, did I learn in the span of a few minutes that that medication was 100% necessary.

I had a broken lamp, a ding in my wall, a knot on my head, and a painful shoulder telling me so.

To set the stage for how all these things quite literally collided: After I didn’t take the meds on Monday night, I didn’t feel all that great on Tuesday, but I hadn’t felt all that great since late last year, so I didn’t think much of it. I learned in my routine physical in December that I have a new thyroid issue, and I suspect I am sliding into perimenopause. (I tell ya, my mid-life had seemingly been one crash landing after another.) I have been experiencing terrible insomnia. I have felt lethargic for large portions of the day. I haven’t had a great appetite. I have developed tinnitus (which is maddening, especially for someone who spends a large portion of her life in silence). I chalked it all up to issues I had been collecting with the thyroid and maybe hormones. The notion of it having anything to do with the medication withdrawal did not occur to me in the slightest. Tuesday night, I had the probably the worst night of sleep since being in the neuro critical care unit in the hospital back in April of 2024. Most of Wednesday morning I felt mildly queasy.

At 12:30 p.m. on Wednesday, I was working like normal, and I joined our weekly video team meeting with my two coworkers, Jill and Simon. The three of us make up our conference planning team, so I speak to them pretty much every day, even outside of work. I have known Jill for almost twenty years, and I have known Simon since I started at the organization thirteen years ago. But these two have run the gauntlet with me these last two years, and I with them. We have each been through the tumbler in our own unique ways. They saw me across the screen in the early days when I was recovering from the craniotomy, and when I would be in meetings, slouched in a chair with my eyes closed, just listening, because I visually couldn’t handle looking at my computer screen for very long. They moved meeting times around when I was so tired from medication that I couldn’t function. They shouldered extra tasks when I just could not get things done in a timely manner.

In short, they were—and still are—unbelievably kind, funny, compassionate, patient, accommodating, and understanding. I couldn’t ask for better coworkers.

And on Wednesday, they were forced to run the gauntlet again. They unknowingly helped redeem painful memories of seizures, turning this seizure into one that later filled me with laughter.

While we met, we ran through our agenda, aiming to discuss some details before we were to be joined by a few members of our data team. At one point, I had something I wanted to comment on while Jill was talking, so I simply raised a single pointer finger to signal that I wanted to interject. She paused, I commented, and we carried on.

One vital thing to note here: I have a standing desk. (A beautiful one, I might add. It had been newly finished, courtesy of my friend, Chet, who installed an ultra-smooth piece of walnut plywood for the desk itself and then installed stone tiles for the backdrop. I love it, and I thought the final piece turned out so well. But that’s not really the vital thing to note here. The point is that I was standing during this meeting.)
 
As we carried on with our agenda, I was still standing when suddenly I felt that dreaded sensation in my left leg, the signal that I knew a seizure was coming—something I hadn’t felt in nearly two years but remembered all too well. Crazy enough, I felt no sense of panic; only the need for politeness motivated me to hold up my left pointer finger again to indicate that I had something to say. In those split seconds, the seizure moved up to my arm, and I could tell it was all about to come undone. Jill noticed my finger and paused, “Yes, Courtney?” She thought I just needed to comment on something. My leg then totally locked up, and I started sliding to the right across my ultra-smooth, beautiful walnut desk. I uttered very simply, with no emotion, “Guys, I’m having a seizure,” and then down I went.

My memory is a bit scattered, but the initial slide into oblivion doesn’t exist in my memory bank. I remember cracking my head on the sturdy Dale Tiffany floor lamp post next to my desk, ricocheting off it once and then hitting it again at the base as I fully hit the ground. As I landed face up, I looked up at the stained-glass globe, swinging violently as it bounced off the wall. I reflexively lifted my right arm into the air toward the lamp to shield myself, as I thought the glass was about to shatter and come raining down on me. My left side was convulsing the whole time, and I had no control over it.

As I finally reached the end of the fall to the floor, my brain gained clarity, and I realized what had happened. I could talk to Jill and Simon at this point, sans raised finger, as they were still on the call. Jill thankfully had my mom’s phone number, so she stepped off to call my mom while I continued talking to Simon. Jill got a hold of my mom, and she asked her whether to call 911. My mom said yes, of course. And I yelled no from the floor, still seizing. “Don’t call 911! It’s not necessary.” Poor Jill was caught in the middle of one person telling her to call 911 while the other—who had taken a less-than-graceful fall and was lying on the floor—was telling her not to.

I honestly didn’t know what all was said, so you’ll have to ask them if you know Jill or Simon, but I remember we were joking a lot, the conversation occasionally fractured by the flow of tears and sobs on my end—not from pain, but from the fact that I was back in a place medically that I had hoped I would never return to. I remember being a sweaty mess. I tend to lean toward the cold side, so that day, I had on a long-sleeve shirt, a sweatshirt, and my fleece bathrobe. So, here I was, laying spread-eagle on the floor, my left side no longer spasming, trying to get out of at least one layer of clothing, but couldn’t because the left side of my body wasn’t working. I figured it out somehow, but I was sweating even more. I put my hand to the back of my head where I banged it, already a goose egg forming, because it felt like it was bloody, but nope (thankfully), just sweaty.

I continued talking to Jill and Simon from the floor, not even trying to get up because I knew my body couldn’t hack it. I generally lose all sensation, coordination, and strength when I have a seizure, so getting up with no one else around was out of the question. But given that I was far enough away from my computer, I was trying to project enough that they could still hear me. I wasn’t yelling, but it felt like it to me.

So, to recap: I politely and calmly interrupted my coworkers to tell them I was having a seizure, tipped over, crashed into the lamp, which crashed into the wall, and then eventually landed on the floor, where I wound up sweating, crying, laughing, and insisting Jill not call 911.

My parents eventually arrived, but my dad was unfamiliar with how to use a Mac and couldn’t log me out of the meeting, so while I was still on the floor, I attempted to prop myself up and I snaked my hand up to the edge of the desk to reach the external mouse to close things out—like some sort of child trying to slide their hand into the cookie jar, hoping to go unnoticed. I was mildly yelling at Jill and Simon, saying goodbye before we all exited.

That’s when the full-on meltdown began. My parents had seen most of my seizures. They were the ones who had been up close and personal with all the emotions and chaos that came with them. My dad helped me off the floor and guided me to my recliner in my bedroom across the hallway. I was now a snot-nosed mess, although at least less of a sweaty one.
 
I immediately took a full dose of the meds I had stopped. Lesson learned. Don’t do that again.

The ensuing twenty-four hours were filled with regrouping and piecing together memories of the fall. It felt like I was putting together a crime scene, connecting one shell casing to the shoe tread to the hole in the wall, wondering how one thing had led to the other.

My parents took me to their house for the evening, with plans to come back to my house and have my mom stay with me for the night as a precaution. As I lay on the couch at my parents’, I reached back to rub my left shoulder and thought, “Yowza, that hurts.” It felt so bruised and sore, but I had no memory of hitting my left shoulder. I peeled off my clothing, only to discover a layer or two of skin had been peeled off in the fall—even under three layers of clothes. So, then I realized that was where my memory must have blacked out, the moment when I hit the desk. All I consciously remember hitting was the lamp, not the desk.

After my mom and I stayed back at my house Wednesday night, my mom noticed the next morning that the lamp was broken and there was a ding in the wall—neither detail I had noticed on the day of the fall.

A diagram of the crime scene

So, to recap the accumulated ailments and missing initial facts, by Thursday morning, I now had a highly bruised shoulder, a goose egg on the back of my head, a broken lamp (made of hearty metal and not easily broken, I might add!), and a mild dent in my wall that I may just leave for posterity’s sake.

Simon and Jill faithfully checked in. God bless my poor friends; I couldn’t imagine what it must have been like to watch your coworker vanish from sight through a computer screen and then hear all this banging around—not knowing if she was alive, dead, or somewhere in between. Simon told me later that the sound of it all made his stomach churn. But he did place a request that maybe I could try to take my computer with me the next time I fell, just so they could be with me on the floor. I told him I’d practice. He also wouldn’t be opposed if we all wore helmets to future team meetings. Ah, yes, Simon’s famous snark and wit, which I love and desperately needed.

But you know what the craziest thing about all of this was? Thursday night I was reflecting on the physical sequence of the fall itself, the detective in me still piecing things together. I fell to my right, so in theory, my right side should have been damaged far more than my left. So, how was it that my left shoulder and the left backside of my head bore the brunt? The injuries didn’t match the direction of the fall.

There’s no way I could have made a split-second decision to turn myself around in that moment. The motto of a seizure is the motto of Silicon Valley: Move fast and break things. I firmly believe it was only through an act of God that in the nanoseconds it took for me to black out, I was whipped around so fast that I was facing away from my desk—thus explaining how my left shoulder hit the corner of my desk and how the left side of my head hit the lamp. My body had to have moved so fast that I could have qualified for Olympic figure skating. If I had still been facing the desk, my jaw and skull would have made first contact with it. And while I’ll never know, I can only imagine that the implications of that scenario would have been infinitely more damaging.
 
A friend of mine shared once that she and another friend adopted a motto when they travel together: It’s either going to be good, or it’s going to be a good story.
 
It’s not good that I had a seizure after nearly two years, but it sure does make for a good story. I think.

All kidding aside, I really am okay. I was slated to have my next routine MRI at the end of this month anyway, but as a precaution, I requested to have it moved up if possible. My oncologist’s office was able to move the appointment up and we’ll have imaging to see if anything did go awry internally in the fall.

General Update: Welcome to Medical Scranton

This one's for you, Kristina, and any other human being out there who understands the absurdity and frustrations of the healthcare system.

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I was texting with my friend Kristina last night, who has had three rounds of cancer herself, sharing with her some of the recent events regarding getting this anti-seizure med, as she knows all too well the realities of a complicated healthcare system. She's been living it for a number of years. I often think to myself in the form of movie parallels, and when I was pondering the whole matter yesterday evening, one scene popped into my head from Home Alone, when Kevin's mom is at the airport, pleading with the gate agent to find her a flight to Chicago so she can get home to Kevin after the family mistakenly leaves him home alone over Christmas vacation. As Kristina and I were texting back and forth on the situation, I sent her this clip on YouTube and commented: "I don't have an 8-year old son I'm trying to get home to but I sure as hell am in some sort of Medical Scranton trying to get to my meds." 

She laughed and said, "Medical Scranton should be the title of your next blog."

I joked with her I was going to rewrite that scene to capture the latest situation I went through with this anti-seizure medication approval. I figured I'd do it at some point, but not necessarily for two hours starting at 1:36 am last night. I can always tell I'm on to something when my brain is buzzing with words at all hours of the night and I'm losing sleep, crafting and rearranging sentences and paragraphs, frantically typing things into my phone as fast as my fingers can move, but still not fast enough to keep up with my spewing brain. That's when I know it's the good stuff. 

Or at least hope it's the good stuff.

So, here we are. The medical version of Scranton as found in Home Alone aka Medical Scranton. 

If this post had opening credits, it would say “inspired by a true story,” not “based on a true story,” (there are distinct differences!) as it goes without saying, the whole thing below is made up, and I used only the skeleton of the real-life situation to recreate the movie scene. I do not write all this to throw my doc’s office under the bus (I am big fan of this doctor himself, but obviously less-than-impressed with his staff at the moment). Rather, I write it perhaps to illustrate the bigger picture of the absurdity of the healthcare system at times; it just so happens that my doc’s office is in my crosshairs. And maybe I also need it for my own catharsis, to find some levity in the midst of a situation that was far more stressful than it needed to be. 

I want to acknowledge that for all intents and purposes, I live a life of incredible wealth and privilege. What I had to jump through in a single week is what some patients spend years wading through (or particularly in marginalized populations, never have the same 'privilege' of wading through). They are already tired and worn out from the physical realities of their condition, only to have to fight their way through a very complicated health system, met with resistance everywhere they go. I’m not here to offer a discourse on what should or should not change within that system. 

This is my own story, one that is filled with a lot of safety nets, including my own personality that bends toward I'll be danged if you're going to tell me 'no.' A lot of patients don't have the kind of energy or drive to pursue things. At the first 'no' received from their doctor, perhaps many would have simply accepted that and moved on, believing that to be the end of the road.

This is merely a small glimpse into what it took to get my new anti-seizure drug approved. I truly do not know what came over me to push back so hard against the doctor’s office. In some ways, it was out of character for me to be so assertive, especially in a medical setting. I’ve often lamented times in the past when I felt like my concerns or wishes were dismissed and I never spoke up for myself. Well, clearly that was not the case here. I felt like I was turning into a trial lawyer, writing mental opening statements, and mapping out how I was going to present my case and what questions I would ask in the cross-examination. You want to tell me this is an impossibility to get this thing approved? Watch me get it approved. 

I even surprised myself on the whole matter.

If you haven't seen Home Alone, or if you have, but don't remember the clip, I would suggest watching here as a primer/refresher:

Now, here's my rendition of how that scene went down this past week in the form of trying to get this medication approved:

Doc's office: It’s impossible to get this medication approved.

Me [said with suspicion]: It's impossible?

DO: I’m very sorry ma’am, but it is Lent.

Me [exasperated, beating my head against the wall]: What about another phone number I can call? 

DO [clicking through things on their computers]: Nothing. We are all out of phone numbers you can call. May I help you get some Zoloft to calm your nerves? 

Me: No, I don’t want some Zoloft. I want my new anti-seizure medication. 

DO: I’m terribly sorry, ma'am, but we are doing some of what we can.

[DO motions for another patient to step up to the desk with their prescription.]

Me [to the next patient]: Go ahead, I'm sorry. Doctors to see, drugs to take. Oh, I see you’ve got a prescription there. That's good.

Me: [Shoves them out of the way, as I move back to the desk.] Look, I have been through two surgeries, rehab, radiation, and eight months of chemo. I’ve puked my guts up, I’ve lost my hair, I’ve taken a nap nearly every day since last June. I’ve called Express Scripts who told me to call me you who told me to call Express Scripts who told me to call you - wait, who I am calling and where the hell am I? 

DO: Medical Scranton. 

Me:  I am trying to get access to my new anti-seizure medication! And now that I'm this close, you're telling me 'it’s impossible' and 'a waste of time'? No, no, no, wait! This is Daylight Savings Time, the season of perpetually increasing sunlight! 

[DO attempts to interject but I keep rolling.]

Me: I don't care if I have to come to your waiting room every day with a bullhorn. If I have to sell my soul to the Holy Spirit himself itself, I am going to get approval for that new medication.

DO: Um, ma'am, if there was anything I could do to assist you in this futile endeavor today...

Me [desperate]: Do it. Do anything.

Me [I jump, startled by a fellow patient coming up behind me]: What?!

Fellow patient: Excuse me. 

[Speaks to the DO] Can you excuse us for a second? 

[To me] Can I see you for a second? 

[motioning back to the DO] Excuse us. 

[Back to me] I couldn't help but hearing you've got a little bit of a dilemma. Well, we've got a crisis ourselves. 

[Motioning to his fellow sojourners in Medical Scranton] Allow me to introduce myself, Joe Medski.

 

[Reaches out to shake my hand] Ya know, the alpaca shearing king of the Midwest? 

Me: I'm sorry, did you say you could help me?

Joe: Anyway, I'm rambling on here. We also are trying to get to our meds. You can only take so many alpaca hooves to the head before you need some help, right? Our medications got cancelled, too, so we gotta fax some things into the Vortex.

[Motions over to fellow patient standing to the side.] You see that guy in the jacket over there embroidered with an alpaca? He’s going to rent us a nice, big fax machine so we can get out of Medical Scranton. Now, I heard you had some problems? You're trying to get approval for a new medication, so you don't sleep or something? Ah geez, if you gotta get out of Medical Scranton, we’d love it if you wanted to fax in your paperwork with ours. 

Me [with hint of awe and profound gratitude in my voice]: You’d do that for me? 

Joe: Sure! Well, why not. What are alpaca shearers for if not to fax paperwork? We all gotta get our meds somehow. We gotta send some things to our pharmacy benefits manager on our way to our third-party administrator and then to our PPO with maybe a stop at HR or the FDA, but admittedly, we’re still a little confused on that last part. Regardless, we’d be glad to slide yours in there while we’re on our way to the next black hole.

Me [overwhelmed with gratitude]: Thank you. Oh, thank you.

Joe: If you don't mind going with some alpaca shearing bums.

Me: No, I'd love to.

[Cue rapturous music. End of scene.]

_____________

All that to say, no alpaca shearers were involved in my scenario, BUUUUUTTTTT, the alternative anti-seizure med that the doctor's office told me was going to be 'impossible' to get approved and would be a 'waste of time' did, in fact, GET APPROVED. Praise God in the heavens above, but Judas Priest and a popsicle stick. What a freakin' joke that whole thing was. And all it took was for them to answer ONE QUESTION - which they did via fax. I've stood on so many mental soapboxes this week that I should be squeaky clean by now with all the soap I've used up.

Now, the next prayer request is that the alternative drug would actually have its intended consequence of eliminating my drowsiness. Maybe by the time next I post, we'll know. 

Until then, if there's anybody else out there in their own version of Medical Scranton, don't lose heart and don't be afraid to advocate for what you need. Your voice matters, even if it seems like it's falling on deaf ears. May the fax be with you.

I Get You Now, Dolly Parton

About a month ago I nearly fell out of the shower. This would have been when I was still on the heels of four seizures in two weeks, so my balance was understandably not great. In that split second, I had a flash bulb moment and realized the name of the book I will never write: The Harrowing Tales of Brain Cancer: What They Don't Tell You in the ER, OR, or NCC. ("NCC" stands for the neuro critical care unit, which is where I have spent the bulk of my time when in the hospital.) I texted this to my friend and former coworker who has been on the receiving end of the anecdotes of my most undignified and ridiculous moments in the last 5 months, some of which I'll share below, and some of which I will never share because, quite frankly, it's TMI. Despite posting the ins and outs of my life for the past five months, even I have limits.

So, in honor of that flash bulb moment, below are some of the more comical behind the scenes moments to my life in the last five months, of which no one in the ER, OR, or NCC thought to warn me about:

• I now understand Dolly Parton. Since the 1980s, the woman has slept in a full face of makeup for fear of something happening in the night and she would be caught not looking like herself. I haven't been sleeping with a full face of makeup on since my diagnosis, but I have become slightly rabid about shaving my legs. I had a hole drilled in my head and 10 staples in February, and all I could think about was getting my hands on a razor to shave my legs. I've shaved my legs more frequently in recent months than I ever have before in my life for fear I'll wind up unexpectedly in the ER again with unshaven legs.
• A few weeks after my craniotomy in April, I noticed what appeared to be these dark mole-like marks along my incision. I went to my routine post-op appointment in May and inquired about it and the nurse very casually said, "Oh, those are probably your dissolvable sutures from your second layer of skin popping through your scalp." Come again? I have dissolvable stitches in my head? Apparently during a craniotomy, they cut your scalp and then a second layer of skin before they cut open the bone plate of your skull. Then they just put all those pieces back together in reverse order when they are done. That second layer of skin gets dissolvable stitches. So, as the top layer of scalp heals, it also starts to sink and settle, thus the dissolvable sutures start to poke through your scalp. Nothing to be alarmed about. Perfectly normally to have rubbery, fishing wire-like stubs poking through your head.
• There were two things I thought a lot about while in the hospital for the craniotomy: 1) the glory of God and 2) La-Z-Boy recliners. I won't get into the glory of God right now, but I thought about La-Z-Boy recliners a lot because for the life of me, I couldn't understand how healthcare systems had not formed some sort of exclusive partnership with the recliner company. Hospital recliners are the most ridiculously uncomfortable piece of furniture, even more so when one part of your body doesn't work properly. I was anticipating death by cancer, but not death by recliner. You have billions of dollars in profits and you can't afford semi-decent recliners that don't require an 80-point turn just to lay on your side?
• 
  The neurosurgeon did a great job of minimally cutting my hair after the biopsy. He did not do as good of a job on the craniotomy. I thought he was just going to shave the whole thing during surgery, and I did not have the emotional bandwidth to do it beforehand myself, so I went into surgery with a full head of hair. I came out of surgery with a partially full head of hair; one large swath on the left, a smaller swath on the right. This photo was shortly post-op. There's just no good way to rebound or salvage a haircut like this. (And ignore the giant plate of food. The hospital kitchen clearly misunderstood my order and thought I needed some extra meat on my bones.) 
• There was a super cute physical therapist while I was in the hospital who was a fraction of my age and probably still in college. Meanwhile I looked like a combination of Frankenstein and Donald Trump with a severe combover in one. My balance also still wasn't great at the time. I didn't stand a chance. Want to go for a drunken-like walk down the hallway while you hoist me up with a gait belt? 
• I'm like a two-year old when it comes to naps these days. My tell? My tongue starts tingling. No joke. That's how I know I'm tired. It doesn't go numb, it just tingles. I then have about a 20-minute window before I need to find a bed and pass out. That little habit has only started since I started taking chemo and radiation, though. So, it has to be related somehow to those two things.
• After the craniotomy, I had so many motor control issues, including my eyeballs. I couldn't figure out how to break eye contact with people and would just awkwardly stare. Even if just passing people by, particularly in the rehab waiting room, I would just stare and stare. So, I just got really good at studying ceiling tiles and dead spaces in rooms instead.
• Sleeping in the hospital is generally an elusive dream. And the one place you really need to sleep and recover? The NCC. But sleeping in the NCC is like a mirage in the middle of a sandstorm, trying to climb up a dune in the Kalahari desert. It's a figment of your imagination. I had two IVs, one arterial line, a drain coming out of my skull, a pulse oximeter, 5 heart monitor lines, a blood pressure cuff, two leg compression cuffs, and a catheter. Best of luck!
• If I didn’t have shoulder problems before, I do now. Because I've had so many problems with the left side of my body, I often drift to my left while walking. So, when passing through doorways, I was routinely taking out my left shoulder. My parents could always tell when I was coming and going out of one particular room in their house that has French doors because I would bump into the left door, rattling it. It was like bumper cars, but between my left shoulder and door frames. My eyebrows also are getting a hell of a workout these days. My brain seems to think they might help raise my arm, as I lift my eyebrows a lot when needing my left arm to do something. It's not actually effective, but my brain seems to think it might be beneficial. 🤷 Who am I to argue? I need all the help I can get.
• When I yawn now, my left arm levitates a few inches. I don’t understand the neurology of that, and I asked my occupational therapist and even he was like, "Yeah, that’s a new one for me.” I either hold it down or just let it do its magic carpet ride of levitating tricks.
• When starting chemo, the nurse practitioner emphasized multiple times the need to double flush the toilet when I'm done. My parents' toilet is getting more of a workout than my left arm. I'm always one to question the "why" behind things and I certainly am in this instance. I keep thinking to  myself, "It’s not a freaking bidet or lawn fountain. Is this really necessary?"
• I’m going bald, my eye prescription has changed, and I have to report bowel movements to my doctor on a regular basis (no pun intended). Is this brain cancer or just the realities of aging?  I have also joined the club of those who have to pee at some ungodly hour of the night, as I'm supposed to drink a gallon of water per day. I’m going to turn into a jellyfish by the time the next fourteen months are over.

And all those are just in the last five months. Who knows what other stories I'll have to tell by the time we get through the next fourteen months when my chemo cycles are theoretically done. There are likely more harrowing tales yet to come! Grab your bowl of popcorn!

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Functional updates:

I'll try to carve out space in each post to provide updates on where I am in the process. So, if you're just here for the nuts and bolts, in the future you can slide straight here to the bottom and skip my idle wanderings above.

I continue to make progress physically and cognitively every day. This is still the best I've felt since surgery in April. I'm walking for longer periods of time, I can hold social conversations for longer periods of time, and I'm gaining better motor control each day. I typed this entire post without using dictation or having to revert to using only one hand, which I think is a first?

I'm beyond grateful to God for how he has directly answered my prayers to be "radiant through radiation." I believe he has been faithful to answer that. I was out walking the other morning, and I pulled up the song "Goodness of God." I sang along with it and giant crocodile tears started pouring out. All my life he's been faithful, even now in these hard, sucky months. 

I still have 2 1/2 weeks of radiation left. I have almost entirely lost all the hair on the right side of my head where I have received radiation. I really want to find a barber who can shave in a super cool design on the left. If you know a barber or stylist who can shave art in hair, give me a shout. I figure if we're going to do this thing, we might as well be all guts and glory and just own it, give people something beautiful to look at it. 

I have a routine post-op with the neurosurgeon this week, which is the first I've seen him since April. I'll have a routine check-in with my oncologist the following week to touch base on how radiation and chemo are going.

Prayers continue to be that God would increase all things in my life -  increase motivation, energy, cognition, strength, faith, joy, compassion, patience, etc. I'm so grateful for the army of intercessors who stand behind me and have been joining me in these prayers.

After Visit Summaries

In light of recent life circumstances, one of my new favorite hobbies is reading my "after visit summaries." These are the summaries that practitioners provide after I have an appointment with them. Given the number of appointments I've had in recent months, I could probably fill an inch-thick binder with printed copies. They provide basic educational info, but then the practitioner also provides customized notes of their clinical observations. It’s these notes I’m most curious about. What did the provider think was worth noting about our interaction? What stood out to them as worth documenting? For instance, here’s a snippet of one of my latest after visit summaries from one of my providers:

Courtney presented to the clinic today with her parents. She had a breakthrough seizure on 5/21/2024, after which one medication was increased and a second medication was continued on 750 mg po BID. She feels that she has more spasm of her LLE. She continued to have LUE weakness which is improving slowly with PT/OT. She had difficulty focusing her vision for sometime on an object or a person. She had more depression and anxiety. She denied headache, nausea, speech difficulty or visual changes.

I decided in light of these summaries, I thought it would be appropriate to write my own "after visit summary" after having an encounter with my own body. Basically, a note from me to me about my own clinical observations of my body. Here’s what I would say as a summary, complete with appropriately corresponding acronyms:

Courtney is a 39 y.o. right-handed female, who presented to the hospital on 2/3/2024 with new onset witnessed seizure, and found to have a brain mass. She now sleeps under the watchful eye of a baby monitor camera because her body can't be trusted to be left alone. It appears her left arm is a bit of a honey badger, which is to say it doesn’t care most of the time. IYKYK. And her left leg is a bit of a baby honey badger, which is to also say it doesn’t care, but it at least does a better job at hiding its obnoxious behavior and has the decency to at least exhibit some good manners on occasion.   

Her eyebrows seem to be getting more exercise than the rest of her body because her brain thinks that by raising her eyebrows, they will be able to assist in raising her honey badger of a left arm. This, of course, doesn’t work. LOL

Patient routinely appears as a sobbing hot mess to appointments. SMH.

Her seizures are as unpredictable as Steamboat Geyser in Yellowstone National Park. 

It also seems she's made some questionable fashion choices lately, which maybe isn’t anything new, but at the very least she maybe should not wear blue and white floral leggings again with the red and white plaid button up shirt. OOTD. The goal of her craniotomy was for the surgeon to remove her tumor, not her ability to discern what it takes to look presentable in public. She also should not be trusted with sharp objects or priceless fragile family heirlooms. Turns out honey badger of an arm really is not helpful when wielding a knife.

She also looks like a skunk Chia Pet. 

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Functional updates

I'll try to carve out space in each post to provide updates on where I am in the process. So, if you're just here for the nuts and bolts, in the future you can slide straight here to the bottom and skip my idle wanderings above.

This last week felt like an all-out slugfest. I had rehab to start the week, and then I end up having another seizure Tuesday evening. On Wednesday, I had a follow up appointment with the neuro-oncologist to discuss both the seizures and how to manage them, and next steps for chemo and radiation. I had to sign the consent to treat forms, agreeing to undergo chemo, and I felt like I was signing my life away. I was crying so hard I could barely see the line where I was supposed to sign. On Thursday morning, I had a consultation with radiation oncology. She was the bright spot in the week. A really lovely doctor. And to our delight and surprise and relief, a family member of ours will be my radiation nurse. Just nice to have a comforting face amid the chaos. So by the time I got to yesterday, I really did not feel like leaving bed. I can tell my stress levels are through the roof. Anxiety is wreaking havoc, causing so many symptoms that it’s hard to tell what’s a side effect of medication versus residual effect from seizures versus stress and anxiety. 

Emotionally, it has just been an incredibly overwhelming week. As much as I was averse to it, the neuro-oncologist did recommend I take an anti-depressant medication. I’ve slept horribly the last two nights, which I would chalk up to anxiety. My body is so tense all the time. I’ve learned over the years that your body will always tattle on you eventually, so even if you don’t feel that stressed mentally, it will show up in some form or fashion somewhere else in your body, which is what I think is happening here. I continue to have problems with my vision, and my left leg is always restless, and I think a lot of it is just anxiety playing out across systems. While I was reluctant to introduce yet another layer of meds, I’m hopeful this medication will bring some relief and support to get my body to calm down amid all the stress and chaos. I'm willing to concede when it's time to wave the white flag. I am not Wonder Woman.

I don't have an exact start date, but chemo and radiation will likely start by mid-June. I will have radiation every day, five days a week for six weeks for a total of 30 fractions. On top of that, I will take chemo (mine is a pill) for 7 days a week for 6 weeks. Only time will tell how my body responds to all of this, but it is a deep source of anxiety the closer I get to the start of it. Your continued prayers for supernatural peace, calm, and joy are appreciated.

Subscriber-only post

This post I originally sent the segment below via email only to those who subscribe to the email notifications, but then thought I should post regardless because I realize there are probably plenty of people who read the blog but aren't subscribed. I wouldn't want to deprive portions of my fan club, rogue though you may be. 😜

If I could give my left arm a Yelp review

There's no official blog post to accompany this email because, quite frankly, that just feels like too much effort. And given that I just had brain surgery a week ago, I think I'm allowed to shamelessly and unapologetically play that card. Although, if you have visited the blog, my bro did post updates, we just didn't send out corresponding notifications. I'm not going to relieve you of your duties just yet, though, bro, as I've got a lot of thoughts and a left arm that still hasn't gotten its $*&+ together just yet. (I'm typing all of this one-handed, while dictating some into a note in my phone and copying and pasting).

As noted on the blog, I made it through surgery and the doctors were very pleased with the outcome. The surgeon was able to remove more of the tumor than anticipated, as we thought it may be would not have very clearly defined edges, but apparently it did, which allowed him to much more easily remove the bad stuff. Immediately after surgery, while in recovery, I had a seizure. And then when I moved up to the ICU, I had another seizure. So the doctors doubled my dosage of anti-seizure medication, which I will remain on. I couldn’t even so much as wiggle my toes on my left foot when I came out of surgery or do much of anything with my left arm. I seemingly made rapid progress after that and quickly regained some motor control both of my left arm and left leg, but then had a bit of a setback over the weekend when I had a series of seizure-like episodes that stripped me of that progress. It was incredibly discouraging. I felt like I was being reminded constantly of everything I was losing. Occupational therapy came in for an evaluation, and there was the reminder yet again of what I couldn’t do. The physical therapist came in and there was the reminder yet again of what I couldn’t do. The speech therapist came in and there was a reminder yet again of what I couldn’t do. I just felt wave after wave of grief, confronted by loss every time I turned around.

I felt that grief yet again when we went to buzz my hair. Contrary to what we thought would happen, the surgeon did not shave all my hair. With my Dad as acting barber, we also buzzed the remainder of my hair over the weekend. Just call me Sinead.

I made progress again movement-wise and had no more seizures, so I was officially discharged Monday afternoon (good riddance IVs, beeping monitors, too-loose gowns, and wretchedly uncomfortable beds).

And thanks, mom, for proofing this before sending. It's one thing to look like an idiot via private texts. I'd rather not look like an idiot in a group email to the masses, brain tumor to blame or not.)

At one point, there was talk of me needing to go to intensive inpatient rehab, but I was able to improve enough, that I will do outpatient, PT, OT, and speech at a facility here in Columbus. So, there’s still a long road ahead of rehab. I keep thinking of the verses related to the right hand of God. Those verses became prayers often while I was in the hospital, that the mighty, strong and sovereign supernatural right hand of God would uphold the very weak left hand of my very human body.

“Now this I know: The Lord gives victory to his anointed. He answers him from his heavenly sanctuary with the victorious power of his right hand.” Psalm 20:6

PS: To anyone that I texted this past week, I apologize if my texts were complete gibberish. My comprehension early on really was not great and I was slightly horrified when I went back and reread text messages and realized what nonsense I was sending people. I told my aunt, it’s like I was drunk texting, only without alcohol.

I can’t thank everyone enough for their fervent prayers of intercession on my behalf. Don’t stop.
And for the record, the left arm would definitely get a one star yelp review. ️

'Twas (Almost) the Night Before Surgery

It's going to be essential I not lose my sense of humor through this rat's nest called cancer and life. I mean, I'm over here texting with a lady from my church about whether I'd be willing to wear a Gandalf wig or a hat shaped like a sloth to hide my soon-to-be-bald head. 

I suppose if you're going down (even if temporarily), you might as well do it with some flair. 

Enter ChatGPT, the wonder that is generative artificial intelligence. It only makes sense in my case, right? If you're a living, breathing human being with a brain tumor, why not recruit the assistance of a non-living, wicked smart artificial brain?

I've used ChatGPT on a few occasions for work, to help brainstorm some marketing ideas or synthesize data. It really is a jaw-dropping wonder to watch in action. Oh, for sure, there are all sorts of dark and scary to the whole idea of AI, but for the basic things I'm doing, it is hilariously helpful at times (also wildly inaccurate other times).

So, as I stare down the prospect of brain surgery in less than 48 hours, I thought I'd put ChatGPT to work for me, to add a little levity before the storm and provide free distracting entertainment.

I gave it the following simple prompt and nothing more. (And for those who are new to the scene, I nicknamed my tumor Flash early on, as a nod to the fact that it grew so terribly slow and in honor of the sloth from Zootopia):

Write a humorous poem about a girl named Courtney with a brain tumor nicknamed Flash being surgically removed.

Seconds later, this was the result:

In a town where giggles and glee were rife,

Lived a lass named Courtney, full of life.

But tucked within her, causing quite a fuss,

Was Flash, a tumor, mischievous and thus.

Flash played its pranks in Courtney's merry mind,

Turning thoughts topsy-turvy, leaving chaos behind.

But Courtney, undeterred, with a twinkle in her eyes,

Declared, "It's time, Flash, for your grand goodbyes!"

Off to the hospital, with courage so bold,

Courtney marched, her spirit unsold.

Surgeons assembled, with tools sharp and keen,

To evict Flash from its mischievous scene.

But Flash, oh Flash, was quite the trickster,

Ducking and dodging, a wily fixer.

Round and round, it led them astray,

A surgical ballet, an unconventional play.

Yet Courtney's resolve was steadfast and true,

With humor and pluck, she bid Flash adieu.

Snip! Snip! Snip! Went the surgeon's endeavor,

Till Flash's antics were foiled forever.

With a wink and a grin, Courtney awoke anew,

No more Flash antics, her skies now blue.

For in life's grand theater, with its twists and its turns,

Courtney emerged victorious, her spirit brightly burns.

So here's to Courtney, our hero so bright,

Who faced down Flash with all her might.

And to all who face challenges, big or small,

With laughter and courage, we conquer them all!

I don't know about the "courage so bold" or the "hero so bright" part, but it is, indeed, time for Flash's "grand goodbyes"!

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Functional updates

I'll try to carve out space in each post to provide updates on where I am in the process. So, if you're just here for the nuts and bolts, in the future you can slide straight here to the bottom and skip my idle wanderings above.

Well, it's almost go-time. Final imaging and pre-op appointment with the neurosurgeon tomorrow. I'll also get the official time for the surgery by tomorrow afternoon. I'll probably post one more time tomorrow evening, but then beyond that, I make no promises as to when I (or my brother, who is my back-up) will post again.

As mentioned previously, I humbly request of anyone local: please don't come to the hospital expecting to visit or see me. Priority one will be my recovery and that's hard enough to do when there is a constant stream of medical providers, let alone a constant stream of visitors. I'm going to need all the rest I can get, both in the hospital and once I first get home, but give me some time and I'll eventually surface. 

I continue to be overwhelmed by the people reaching out, saying they are praying for me. Words will never express how grateful I am, so I won't even try. 💕

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Pack Your Parachute

If you're just joining the party, I'd recommend reading my first post as a primer, which includes a few disclaimers and housekeeping items of note.
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Let's start with the fact that I've had cancer for all of about five minutes (well, technically, I've had awareness of it for all of about five minutes, but it's actually been hanging around in my brain for a sneaky long time), relatively speaking, which makes me a total rookie when it comes to navigating the awkward social moments of breaking the news to people, some of whom I haven't seen in years and would consider mere acquaintances. But these are also people I know would genuinely care to know about all that has unfolded in my life as of late, so it becomes the $64,000 question: 

To disclose or not to disclose? 

I've discovered there's just no good way to take off from the conversational runway in such moments and there's just no good way to put the landing gear down either. 

Crash landings are the inevitable result. 

And apparently one does not get handed a parachute when leaving the hospital after a brain biopsy and a cancer diagnosis.  

I was out to dinner this past week with a friend, and as we were leaving the restaurant, I bumped into a woman I knew through Bible Study Fellowship. We'll call her JoJo for the sake of this conversation and to protect the unsuspecting innocent. I haven't been involved with BSF for several years, but when I was, I was on the leadership team, which was how I first met JoJo. She was also my mom's BSF small group leader at one point and I knew the two still kept in touch on occasion. She's a lovely woman and it felt important in the moment to let her know what all had transpired. JoJo was with a group of friends who went on ahead to their table, while my own friend waited patiently off to the side. 

We get to chatting, and I'm mentally trying to figure out how to basically give the I-have-cancer version of an elevator speech. 

It appears that task is far harder than one would imagine because it turns out my brain can't move that fast (when all else fails, I've decided to adopt a "Blame it on the brain mass!" strategy). I start fumbling through, talking somewhat rapidly, like I've just become incapable of forming coherent sentences or acting like a normal human being. 

"Well, so, this is going to be really heavy, but don't feel like you need to say anything, I know it gets weird and people don't know what to say, so it's totally fine..."

I'm gesturing with my hands and rambling. I'm cringing on the inside. 

At this point, her eyes are widening slightly, and I'm thinking to myself, "Just.get.to.the.freaking.point already. You're not a lawyer needing to offer up the fine print of disclaimers and caveats." 

A close equivalent to my own
facial expression post-crash landing

I could feel the tears coming and I finally say, "I have cancer."

And God bless the woman, she was so gracious and kind in the moment. She really was. She gives me a hug and offers some words of encouragement. We finish chatting and she rejoins her group.

Meanwhile.

I walk away, silently mouthing the words What the hell? and exercising enough self-control to not smack my palm to my forehead.

A few days later, I had a shot of redemption. 

This time around, I'm at the polling station to vote early, and a sweet teacher of mine from middle school is one of the poll workers. We offer each other the obligatory greetings and then she asks, "Well, how is everyone in your corner of the world?"

I pull the string on my metaphorical parachute before we barely get started and don't even make an attempt to deliver the I-have-cancer elevator speech.

I just smile and lie through my teeth, wanting to avoid a repeat of my first crash landing, "Oh, we're hanging in there, ya know." 

I take my ballot and head off to vote.

I mean, what am I going to say? 

"Welp, turns out I have a rare form of brain cancer. I'm literally one in a million. Can you even believe it?! But looks like this county coroner isn't going to elect himself, so I best be moving on down to the voting booth. You take care! Make good choices out there!"

I probably could have yelled over my shoulder for my good measure as I walked away, "And don't forget to pack your parachute!"

For the love of Pete.

It's not that I mind telling people or that people are aware of what's going on in my life. This whole thing is not some deep, dark secret. I mean, hello, I have this blog I'm using to broadcast the assorted unstable wanderings of my brain and body. I want to be sincere and authentic in my interactions with people, but sometimes it really is just not a good idea to unload on innocent, unsuspecting people in the moment, as these interactions are certainly no fault of theirs. 

If you have been one of those unsuspecting people here lately, my sincere apologies. 

Blame it on the brain mass. 

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Functional updates:

I'll try to carve out space in each post to provide updates on where I am in the process. So, if you're just here for the nuts and bolts, in the future you can slide straight here to the bottom and skip my idle wanderings above.

Yep, still over here contemplating next steps regarding surgery and all that. Much like my brain mass, I take my sweet time.

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PS: Want to leave a comment? If you select "Anonymous," would you mind including your name directly in the body of your comment? That way I know who you are!

What Is Saving Your Life Right Now?

If you're just joining the party, I'd recommend reading my first post as a primer, which includes a few disclaimers and housekeeping items of note.
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Author Barbara Brown Taylor tells of a time when she was asked to speak at an event and the host gave her this prompt for their conversation:

What is saving your life right now?

It's a worthy question. And for all you proper church-y people, it's not a question meant to provoke the Sunday school answer of "Jesus." Yes, we who are Christ-followers acknowledge that Jesus is the one who has saved - and is saving - our lives right now. But that's not what the question is getting at. It's a more nuanced, earthy question. 

What is the thing that is keeping you between the ditches? What is the thing causing you to pause in relief, reminding you that you might just make it through the day after all? What is the thing maybe breaking the dam of emotions you've been holding back and finally giving you permission to just let it all pour forth, all guts and glory, snot and tears?

What is saving your life right now?

I have a long list of things saving my life right now, none of which has to do with neuro-oncologists, neurosurgeons, research papers, hospitals, or medications. Yes, while those things are quite literally saving my life these days, there are plenty of things that don't come with prescription labels or have the title MD after their name that are saving me.

That #1 Top Banana Award from my friend Cheryl, with the inscription "The bestest of the best rare brain cancer person ever," that showed up in my mailbox and made me laugh out loud. (Turns out, yes, apparently you CAN get merit badges in some form as an adult!)

It's saving my life right now. 

The hilarious packaging on my new ROAD iD band. My sorority sister Kristina recommended the company and suggested it might be a good idea to get one. In my case, I specifically chose one that is a medical ID bracelet. There's nothing that can fully prepare you for the moment when you have to decide how you want to define the sum total of your health status in 20 characters or less. I'll take "Brain Cancer & Seizures" for $2,000, please, Alex? But I have been nothing but impressed with this company and their thoughtfulness. They produce a product that is in essence a fairly serious matter, but they have somehow found a way to thread the needle ever so carefully, marrying levity with sensitivity. (And if you want to get your own ROAD iD for any reason - medically-related or not - you can use this link for $10 off. #YoureWelcome. PS: Beware - I found the link didn't always work in the Safari browser.)

It's saving my life right now.

And that meme you sent me, Kristina, that said, "Really mad about how fast my life went from MySpace to MyChart," the one that made me laugh out loud all alone in the middle of the grocery store aisle like an idiot?

It's also saving my life right now.

The wit and honesty of Kate Bowler's book Everything Happens for a Reason and Other Lies I've Loved. She stuck the landing on this book. Like a breath of fresh air that I didn't know I was gasping for. I laughed. I cried. I read it in two days. (I'm also working on her other book No Cure for Being Human. I would love for her to be my new best friend. Thank you, Venita, for the recommendation.)

Her words are saving my life right now.

The steady stream of text messages and cards from friends and family. It's like Christmas in the mailbox these days. I love snail mail so much. It's a lost art form, handwritten cards, which makes me cherish all the more every card I get. But I still love the modern-day art form of texts and emails, so don't feel bad if you've been one of those people who have opted for modern over old-fashioned. I'm an equal opportunity lover of words, no matter what form they come in.

Those are saving my life right now.

The phone call to my financial advisor's office to sort out some logistics, and I break the news to his office manager, explaining the basics of what has transpired. I can hear the catch in her voice before she says, rather forcefully and with some conviction, "I'm so sorry. This just sucks so much." Her simple acknowledgement that this is a profoundly sucky situation without offering anything more?

It's saving my life right now.

That new song of Christy Nockels, a newly released remix of "Let It Be Jesus," the song that has been my anthem through all this? My friend Jill sent it to me while I walked laps around my parents' yard, trying to keep my body moving, forcing my brain to figure out how to coordinate things again. I shed a fair amount of tears as I listened, grief and hope all piling up at once within me. 

Yeah, it's saving my life right now, too.

The list could go on and on, because there is just so much that is saving me right now. For every breath of fresh air (figuratively and literally) and for every moment of levity, the moments of sadness, tears, and grief - those, too, are saving me right now. Because sometimes just acknowledging the weight of all that is broken in the world - whether in my own or someone else's - to truly lament, is saving me as much as laughter, memes, and Top Banana awards are.

Acknowledging that sometimes joy and grief are dance partners to the same song?

That's really what's saving my life right now.

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Functional updates:

I'll try to carve out space in each post to provide updates on where I am in the process. So, if you're just here for the nuts and bolts, in the future you can slide straight here to the bottom and skip my idle wanderings above.

This update will be short and sweet like the last one - I still haven't made final decisions on whether to pursue surgery, nor have I made a final decision about who I am ultimately going to tap as the lead on my care. Deciding who gets to crack open your skull, remove part of your brain, and then pump your body with a cocktail of drugs is apparently something you should ponder for more than 6.7 seconds. Go figure. It took me 7 months to finally decide to buy a couch, as one friend reminded, and you think I'm going to move very fast when it comes how to treat my cancer? I know I need to make decisions soon and I will likely set a self-imposed deadline for the near future, but for now, I keep reading research papers, going over notes, and just having a lot of long, hard conversations with Jesus about what comes next. My chief prayer for myself continues to be Ephesians 1:17-18: 

I keep asking that the God of our Lord Jesus Christ, the glorious Father, may give you the Spirit of wisdom and revelation, so that you may know him better. I pray that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in his holy people...

Yes, I want to know what to do about surgery and treatment and the countless other unknown details of my life, but I also just want to know him better in the midst. I want to know the hope to which he has called me. He has granted me discernment in the past on a thousand and one things; I trust he will do it again.

It is worth noting that today is the first day I did an actual workout since everything went sideways back on February 3. My body is still all sorts of dysregulated, but it was a start and it felt like a small victory. I know I need to keep my body moving, so I've tried to be diligent about at least walking every day, even if for only a few minutes.  

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PS: Want to leave a comment? If you select "Anonymous," would you mind including your name directly in the body of your comment? That way I know who you are!