Losing a Day

 

 Yep, you read that right. Well, maybe you did. This is my husband's best handwriting, but it's not super legible so I'll copy it out here just in case:

If you lose a day or

If you lose your mind

Know you will never lose me

 Ok, so our humor tends toward the morbid, but it keeps us entertained! What does this cryptic message come from? Well, here's the story.

 A few weeks back, I went to the ER for some pretty intense neurological symptoms. I was having memory issues, extreme fatigue, pressure in my head, dizziness connected with tinnitus and nausea. All of these sounded an awful lot like the hydrocephalus I had experienced before and I was concerned that perhaps my shunt wasn't working as it should. I messaged my neuro oncology team and they called the next evening and said I should go straight into the ER. It was 5:30 in the evening and I knew the ER would be busy after hours so I asked if it would be ok if I waited to go in, but they said it was important to go right away. So, we packed up and headed out.

 Packed up? Yeah, we've learned the hard way that you have to bring a "go bag" with you when heading to the hospital in case you get stuck there for a day or two - or maybe a week or two! So, we bring a bag with a few toiletries, changes of clothes, and other necessities (like snacks and water bottles). This bag doesn't have to be packed afresh each trip, we keep it packed and ready to go, but my husband (wisely) likes to double check it before we head out. We learned the importance of having such a bag with us when we went in for a routine check on my head incision and ended up staying in the ICU for two weeks! My son had to bring us a list of items that he had to hunt through our house for, and we kept remembering "one more thing" the whole time we were there. Ever since, we bring our "go bag" with us whenever the chance of an extended hospital stay is possible.  

 Traffic isn't too bad heading North into the city in the evening, so we made pretty good time, but that's where the time benefit ended. We entered the parking garage we usually use when visiting the hospital and found an open spot on the second level, but when we went inside and pushed the elevator button, nothing happened! We tried multiple buttons and waited, but no car came, and the light wasn't fully illuminated when we pressed the button. So, my husband figured out a work around. He would go up the three flights of stairs to the hospital and then bring the elevator car down to me. Up he went, and I waited, and waited, until eventually he came back out of the stairwell! Turns out all the elevators were down, and there was no way I was going up four flights of stairs to the ER carrying my rollinator. So, my husband got the unusual privilege of going the "wrong way" out of the parking garage - the direction you are only allowed to go if you are visiting the ER, which we were. He dropped me off and then returned to the parking garage and made his way to meet up with me. Meanwhile, I checked in and then found a spot for me to sit in my rollinator, because every seat in the waiting room was full! In fact, the secondary waiting room was full as well and people had spilled into the hallway and were waiting outside as well. I was brought back to triage quickly, where they put in an IV and drew a "rainbow" of blood - one of each color vial. Then I returned to the waiting room where I... waited. And waited. And waited. At one point they came to get me and took me down for a shunt series of xrays to make sure everything was where it should be. Hours (yes HOURS) later they brought me back for an EKG, trying to knock out the tests they could before a room opened up for me. After FOUR HOURS in the waiting room, I was finally brought back. I was pretty salty about this and blamed it on the doctor's office not calling me until evening and then saying it was urgent enough I had to go in that day, but the next week I went into the ER on the same day, but in the morning, and waited FIVE HOURS. So, I can't really be salty about this anymore. 

 Getting a room didn't end the waiting, it just made it more comfortable - for me anyways. I got a bed, but my poor husband went from the cushy waiting room chair to a flimsy folding chair in the room. We determined at that point to bring a "butt seat" (a foam seat cushion we add for my tail bone comfort to certain chairs) with us whenever we came to the ER, which we did the next week. After sitting for 4 hours on the hard rollinator seat and then my husband sitting for the next TWELVE HOURS on a folding chair, this was a hard-learned but valuable lesson. We waited a few hours and then, finally, they came to get me for the CT scan that I had come in for in the first place, seven hours before. In the ER they are very concerned about fall risk and they wheel you around in a wheelchair everywhere. They wheeled me back to CT, and when I entered the room it was a gut-punch. The CT machine looked very much like the radiation machine, which also had a CT in it, that I had used for six weeks earlier this summer. It wasn't completely like a PTSD response, but it hit, hard. Still, I managed to lay down and get through the procedure. There were a few tears leaking down my face, and I was managing my breathing very carefully, but I got through it. That was a little after midnight and it wasn't until nearly 6:30 am before we heard back from it. My husband managed an hour nap by propping his feet on an additional folding chair and resting his head on the wall. He's amazing! In my first ICU room a few years ago, he actually had to sleep on the commode 😝. God has blessed this man with incredible sleeping skills! Shortly before the nurses' shift change at 7, the neuro team came in. This is 4-6 neuro residents that work under the neuro surgery doctors. 

 It would be a significant understatement to say that the different teams at the hospital are very territorial! I had my shunt adjusted by neuro surgery back in December of 2025 because my ventricles had become "slit-like," which is an indicator of "slit ventricle syndrome." At my regular follow up with neuro oncology the following April, when they determined the growth of my tumor, they also noted that my ventricles had swollen and they decided to change my shunt setting. When the neuro surgery team saw that in my chart, they were quite perturbed, to say the least. How dare neuro oncology mess with their hardware without their permission! In the assessment of the team, my shunt should not need to be adjusted at all, let alone about every six months for the last three years. Evidently, most people find the right setting within a few months of installation and it stays there for the rest of their life. No one had told me that before! Even though they were loathe to do it, they ended up deciding it would be best to adjust my shunt one more time, since neuro oncology had inappropriately opened it too far. This was a few more hours of back and forth between me and the attending physician, my neuro surgeon. I was blessed, though, with an amazing resident who took time to talk with me and explain everything in detail. He never made me feel rushed, even though he was supposed to head out to a meeting. I felt very blessed. Eventually, because his meeting was cancelled just as he was stepping into his uber, he came back and adjusted my shunt back to the setting neuro surgery had put it at last December. He also ordered a liter of fluids to be infused. 

 The hardest part of this visit came after the neuro team's first visit. I lost it. These doctors had come in and told me that essentially there was nothing neuro surgery or neuro oncology could do for me. I was too far outside of radiation treatment for my symptoms to be related to that (which I firmly disagree with) and since there were no reasonable surgical options, neuro surgery was out as well. They suggested that I should probably move my care to neurology. That was a HUGE trigger. My last visit with a neurologist was the worst doctor's appointment I had ever had. When the neuro team insisted that this was my next line of treatment, I was devastated. I'm not a crier. I definitely don't cry in front of people, but at that point, when the team left, I cried. I cried hard. So hard my new nurse heard me from the nurse's station and came to check on me. I poured it all out to her, how desperate I felt and how hopeless, and she was so kind. She listened patiently and responded in a way that left me feeling loved. No, she couldn't do anything about it, but she made me feel a little less alone in all of it. And she got me a cup of water. When you haven't had anything to eat or drink for more than 12 hours, that is a HUGE help. 

 Once the fluids were all infused and my shunt adjusted, they sent me home, where my husband and I went down for a well-needed nap! We took it pretty easy on Thursday, I don't remember much, but I think that's because there's not much to remember. We slept, we rested and watched TV or my husband played his video game while I watched, our usual relaxing options. My husband had worked all night in the ER so he didn't need to do any work during the day. That was all pretty chill, things didn't get weird until the next day, and that's where this long-winded explanation finally gets around to the story I mentioned at the beginning of this post.

 On Friday, I got up as usual and by about 9:30 am, I was ready for my first nap - which, again, was pretty typical of how things have been going lately. But that's where things diverged from the usual. My typical naps are 45-90 minutes, but this one lasted FIVE HOURS!! After my nap, my husband took me to my mom's house for grandma night, our weekly meetup that has been going on for 27 years. We ate. We played a game, as usual. I did pretty well, my score coming in the middle of the spread between my mom and my husband. I'm told I acted very happy and a little "high." I say "I'm told" because I don't remember one minute of it. Even now, nearly two weeks later, nothing has filtered through. There's a strange, dream-like impression of having played the game we did, which was unusual. We always play some variation of the DC Deckbuilder, but this one, Arrow, almost never gets played. The next day when I woke up, pretty late, my husband asked me which day it was and I responded confidently, "Friday," when it was, in fact, Saturday. I wrote texts and emails to people, had conversations, and I don't remember any of it. 

 Have you ever lost a day? A WHOLE DAY? I haven't. It is VERY disorienting! And disconcerting. It hasn't just bothered me, it has bothered my whole family, who have kept better tabs on me since and checked in on my cognitive issues regularly. Remember those texts and messages, yeah they did too, but I didn't. So, when I contacted them on Saturday about things I needed to, that I had evidently contacted them about on Friday, they got pretty concerned. I felt awful. Not only did I have to contend with having lost a day, I had worried my family quite a bit. 

Here's the Thing: Thankfully, this hasn't happened again. I'd like to chalk it up to the stress and sleep-deprivation of the ER, but this is far from my first instance of this, and I've never had a memory issue like this before. I have a follow-up with Neurosurgery at the end of this month and with Neuro Oncology at the beginning of next month, so we'll see if they have anything interesting to say about it. Most likely they'll just refer me to neurology 🤣🤣🤣