I’d Rather Have My Wife Write For Me [Sunday Thoughts W/ RageWynn]
Hey hi hello good whatever time of day it is! Today is Sunday, January 12, 2020. The weather in Brooklyn is way too warm for January & Pantone whateverthefuck, and somewhere, someone is thinking “wait, why is he having his wife write for him? I thought he was the writer? All his wife contributes is absolute nonsense every so often and we don’t care about it. Whatever, I’ll keep reading because she’s already making fun of him and that’s the kind of content I care about.” You’re correct, person thinking that. I’m Rachel Wynn and I am by no means a writer… but I guess technically, for now, I could be considered one. Because I’m writing this. Whatever. Here’s the stuff people actually want to know. Or maybe not. It’s going to be a lot, but I really just want to lay it all out for myself so my brain stops making me recap everything for JUST me. Buckle up, kids! We’re about to talk about leukemia and seizures and a stroke, oh my!!!
Before I actually dive into all of this, I need to just remind you that I am by no means a writer. Also, I had a stroke. So… my brain was scrambled like eggs, as I so obnoxiously and repetitively described it throughout the last 17 months. Also, the type of leukemia I had was APL, which is considered a rare form of the disease. That’s right, I had a rare form of… a rare cancer. Winner winner, leukemia dinner. This is all MY OWN PERSONAL recollection of the events that transpired. I’ve been told some of them are out of order, or incorrect. I don’t care. They’re staying. Because it’s MY recollection of what happened. And it’s a fucking miracle I remember anything at all. So don’t @ me with corrections. I’m also probably going to jump around. I won’t apologize. It’s just how my brain functions now. I’ve gotten more used to it, but it has been HELLA frustrating. I’m also probably going to say “hella” a lot. Not sorry for that either. Also definitely going to switch back and forth between present, past, and future tense at the drop of a hat. Deal with it. Or don’t. Whatever. OKAY, HERE WE GO!
DATE: August 20, 2018
TIME: Roughly 5pm
LOCATION: Emergency Room, Brooklyn NY
“Is anyone here with you?”
“Do you want someone to be here with you?”
“Uh, can you just tell me what you need to tell me?”
“Okay, so, you have leukemia.”
“We need to start treatment immediately.”
“We’re going to transfer you to a hospital as soon as the location has everything set up for you… are you okay? Is there anyone we can contact for you now?”
“Nah, my dad is on his way here. Thank you!”
So, there was that. I was sitting in an ER, by myself, having just been told I had (what I had only known as a “kid”) cancer. I would later be informed that it was mostly kids and old people. Did I get it late? Early? What the actual hell? Whatever. I had leukemia. I didn’t say it out loud, and I think I was a little bit in shock. Maybe a little bit of denial as well. I just went back to scrolling through twitter using the terrible reception that apparently exists at every ER, as I would later find out. I just sat there, minding my business, while a slightly older woman was next to me, moaning real loud because she had… a tummy ache. Bitch, this weird doctor just told me that MY BLOOD IS TRYING TO KILL ME. Get outta here with your tummy ache. Back to scrolling through social media. Wondering when dad is going to arrive. Thinking “okay good I’ll have the doctor tell dad when he gets here.” Suddenly, I think I’m going to throw up? Yes. That’s definitely going to happen. I haven’t eaten, so at least nothing gross will come out. That’s a positive. I see a nurse! Great!
“Hi! Excuse me, I think I’m about to throw up. Do you have a bucket or something?”
“You’re going to throw up right now?”
“Are you sure?”
“Let me see if I can go find something somewhere gimme a few minutes.”
*throws up on the floor*
“… or I’ll go get a clean up crew. I can’t say you didn’t warn me!”
In my defense, all I had consumed was water. So, that’s what I threw up. Water. Straight up water. They brought in a guy to clean it up. I apologized to him repeatedly, and he was like “for what? You told them! Stop apologizing.” I will never forget you, perfectly sassy middle aged man that cleaned up my waterpuke. I hope you’re doing well.
Soon enough, my dad arrived. I saw him and just sat there like everything was fine. He knew it wasn’t, but whatever. I made the doctor on duty (who was NOT the same doctor that told me the news) come over and tell my dad. I expected him to react a certain way, and he just took the information in and started asking questions that I would NEVER have thought to ask. Dad is good at a lot of things. Shutting off the emotion to get information is definitely one of them. Straight up, my dad has been my number 1 advocate for my entire life, and I knew he’d handle this like a champ. How did he react when I wasn’t in front of him? No idea. But bless his HEART, the man just got right into figuring out where I’d be transferred, when, and what the next steps were. I stopped listening. I was still in deep denial that this was a thing.
Dad obviously sat there with me until it was time to be transferred, but he also told me that when Troy arrived, he was going to make ME tell him. I still hadn’t said the words out loud. So my brain wasn’t forcing me to accept it as fact yet. I did not want to accept it as fact. But alas, Troy arrived eventually. Apparently, I had initially given him the wrong ER location. Because I am the worst. Consistently. Still to this day, I am the worst. That doesn’t mean I’m going to change anything, but I acknowledge my worstness. Whatever. Troy got there eventually. He walked in, sat down next to my dad, and stared at me.
“Hi! My name is Rachel Wynn, and I have leukemia.”
Troy is already a relatively pale fella, but he turned somewhere between a green and a gray? Let’s go to his style of writing real quick: I would consider the color he turned to be like a Pantone 14-5706. In summary, he was uncomfortable! We had JUST moved in together, like… two months prior. He was about to become the primary guardian for my asshole of a cat for however long I was supposed to be in this hospital. That’s a lot of responsibility for a boyfriend. And we really didn’t even know what was coming. It would get SO. MUCH. WORSE! We love a plot twist.
Genuinely, the last thing I remember is being transferred from the ER to NYU Langone. Troy rode with me in the ambulance, and my dad drove his car over and met us there. The last thing I have any kind of memory of is being unloaded from the ambulance and being wheeled towards the doors. From there? My brain has blocked everything out for… a real long time. I still don’t remember any of it. I’ve been told that I met a bunch of people, was informed of my treatment plan and what was to come, but I don’t remember any of that. Because ya girl decided to one-up the leukemia diagnosis and had herself a fucking STROKE.
I guess they transferred me to the ICU when that happened. And because of who I am as a person, I apparently got… aggressive? Shocker. So whether I “slipped” into a coma, or was put into one so I would stop aggressively pulling things out of my arms is still up for debate in my brain. But my brain is dumb anyway. Whatever. I could be monitored nonstop in the ICU, with nurses on me at all times. I do not remember a single one of these nurses, but I wish I did. They were the advocates I never knew, but definitely needed. I’m going to just throw this out here real quick: NURSES. ARE. THE. MOST. IMPORTANT. PEOPLE. ON. THIS. PLANET!!!!! THEY SHOULD BE PAID JUST AS MUCH AS DOCTORS!!!!!! HUG A NURSE TODAY!!!! THEY COULD PROBABLY USE A HUG! AND A RAISE! PAY THEM!
A nurse was apparently the first one that suggested removing my breathing tube! The doctors were like “nah, girl. She needs that to… breathe.” The nurses were like “… we don’t know that. We haven’t let her try to breathe on her own. If we take it out, and she needs it, we can just put it back in.” And the doctors were still not about it, but they let it happen, I guess. So ya girl breathed on her own. Like a damn professional. Weird flex, but okay.
Oh, important note: I “left” the coma twice. The first time was when I still had a feeding tube and other such nonsense. It’s where this photo came from:
(PEEP THOSE BRUISES!!!!! YA GIRL WAS JUST FLESH AND BRUISE!)
But, it was a fake return from the land of the coma. These fools transferred me out of the ICU before I was even actually awake! I tricked them all! I wasn’t really out of that coma! And they moved me anyway! I don’t know how it works. I’m not a nurse. I would say a doctor, but, again, nurses forever. When I REALLY came out of the coma, I guess the nurse that was on me had left for a minute for something, but my dad was sleeping in a chair(?) in the room. I woke up, apparently UNPLUGGED MYSELF from everything- took off monitors, removed IVs, the whole nine- walked over to where dad was sleeping, and I started petting his head. And from there, I was awake. I hadn’t walked in over two weeks, but I walked over to dad and pet his head. What a fucking weirdo I am.
A bunch of things happened once I was awake again, but somehow my brain decided to think it was 2016ish instead of 2018. I thought I was 26 instead of 28. I thought the Mets still had a chance. I didn’t know that I lived in Brooklyn. I was virtually blind. I was constantly trying to con the nurses and doctors into letting me do things I really shouldn’t have done. I wasn’t allowed to drink water, because everyone was afraid I would choke. I was thirsty as HELL, because I always am. My dad eventually convinced the nurses to bring me ice chips. I LITERALLY CHANTED “ICE CHIPS! ICE CHIPS! ICE CHIPS!” like I was watching a sporting event and hoping to encourage the outcome of my choosing. Did that make sense? Probably not. I’m leaving it. To Troy, I didn’t know who he was. When he would leave the room, I would laugh with other people about just wanting to mess with him, because apparently in ANY state of being, I am still an asshole. Whatever, he has since married me anyway.
The rest of my time in the hospital was a lot of poking, prodding, being quizzed about my name, the date, where I was, and being told to smile. It sounds like a typical “jUsT SmIlE SwEeThEaRt” thing, but it was apparently to see if I had any stroke type symptoms. ALLEGEDLY. If I ever see those doctors again, you bet your ass I’m going to be demanding that THEY smile. Also, asking someone who has been living in a hospital what the date or day of the week is? Truly ridiculous. Every single day is exactly the same. Doctors come in, spend 2 seconds asking you dumb questions, suggesting new equipment be installed in your body “to keep you alive,” take a nap, have different people come in to quiz you on things and suggest you start learning how to walk again. Even if that WASN’T the case? I never know what day of the week it is anyway. It’s a dumb question. Stop asking it, medical professionals.
I spent the last game of David Wright’s professional baseball career at the hospital, watching by myself, while my friends and family went to the game. It was the first time I had been left alone at the hospital throughout the entirety of my stay. Which honestly says a lot for my support system. It was strong as hell. My dad and Troy traded off with being there at virtually all times. My mom was there a bunch. My grandma, my aunts and uncles and cousins. My brother took emergency leave from the army to come to New York and spend time with me with his wife and my nephew. But the two people that came through the absolute most for both me and Troy (who also ended up being the best man and maid of honor at our wedding) were Joe and Kelsey.
Joe and Troy have been friends for years. Kelsey is his roommate, and we became friends through our mutual Connecticut ties, and being the only two non-Michigan people in their group of Michigan people. Those two were at that hospital with us for a truly ridiculous number of hours. They would go with me go various MRIs and other tests. They would sit there with me while I watched endless episodes of SVU and The Office. Joe brought me a weird hat thing that I wore in the hospital when other people came to visit and brought me milkshakes because I wanted milkshakes, but they made me SO COLD. Seeing them regularly made me feel like less of a sick person, and more of just… a person.
That’s not to say that Troy didn’t do the same. That dude did not need to do what he did for me during those two months in the hospital and beyond. The real problem Troy seemed to face was that he knew me extremely well before all of this garbage, and now had to see how much different I was, and how much more difficult things were for me. He had to watch me struggle to place names to faces. He had to watch me get so frustrated with my inability to express myself in words that I would just cry instead, and refuse to speak at all. I was, to be quite frank, a huge fucking asshole to him at times. I was told after all of this crap that my dad had the AUDACITY to present the option of a virtual “eject” button for Troy to escape this relationship, knowing that it was going to be a lot to handle when all was said and done. Obviously, he did not take dad up on this blasphemous offer. Troy has been 194759802734% in this relationship since day 1. I love the absolute shit out of him. Even when it smells.
I got off track somewhere and I don’t feel like finding where that all happened, so now I’m just going to quickly recap things that I think I forgot to mention:
– I had a shunt installed in my head. It basically just takes any extra fluid that may build up around my brain and drains it into my gut. I guess I pee it out somehow. The science makes no sense to me. All I know is, I have an actual effing brain drain.
– I also had a PICC line installed that would make it easier to have blood drawn and chemo pumped into me, because I was having blood drawn CONSTANTLY, and I have veins that are just as stubborn as I am.
– My chemo was arsenic. Like, the poison that used to be used to kill people slowly and discreetly. That was the crap that kept me alive, somehow. My first round of chemo was always supposed to be in the hospital, just because it could have made me feel gross. I mean, it might have. But I was in a coma, so… ya win some, ya lose some.
– When they finally released me from the hospital, I was sent to a rehab facility so I could learn how to be a person again, I guess. I had to build up leg muscles again, because I live in New York, and wouldn’t be able to function if I couldn’t walk around confidently. I was at the rehab spot for two weeks. It felt like an actual eternity. I had nurses and therapists come in to work with me Monday-Friday, and then weekends I was kind of on my own. I had speech therapy, which was really more for trying to get me to read again, and how to acknowledge things that were going on around me. I still don’t really know what the next one would be called. It was an awesome girl that tried to build up my brain again. We worked together to try and read again, since the stroke knocked out my ability to do that somehow, but we also did a lot of other things. The one that stood out the most for me was when we spent an entire 30 minute session just talking about what I do for a living. Literally all I did was talk about my job. And it was the most I had spoken without repeating myself or forgetting things since this whole thing started. I so badly wanted to go back to work. I love working. It’s my favorite hobby. Oh, and my last therapy was physical. Pretty straight forward. I had to learn how to walk up and down stairs again. And just walk in general. That shit was exhausting.
– Counting down the days until I got to go home wasn’t working for me. My brain wasn’t comprehending that very well. So we started referring to it as how many “sleeps” I had until I was allowed to go home. My dad and I started counting it as “X sleeps til Brooklyn.” When the day came that I was allowed to go home for the first time in tWO MONTHS, I was H Y P E D. I got to wear real clothes again. And SHOES. And I didn’t have to wear fucking no-slip socks anymore. I hated those with a truly burning passion. Troy stayed at our apartment and made sure the place was clean and there was nothing I was going to trip over when I got home. Dad drove me home and I felt like I had just broken out of prison.
I finally made it home. There is a small staircase to get to the elevator in my building. 8 stairs. I made it up those stairs and was EXHAUSTED. But I was so thrilled to go see my cat that it didn’t matter. Troy opened the door, I walked in, and saw my cat for the first time in two months. And I sat on the floor. And cried like a little bitch. I don’t really remember much else from that day. Just going home was overwhelming. People wanted to come see me. I just wanted to take naps. Eventually, people came to visit. We had eye patch decorating parties and ate insane cakes. And Taco Bell. A LOT of Taco Bell. The only things that never left my memory were the JG Wentworth jingle, and my Taco Bell order. That says all you really need to know about how my brain works.
Soon enough, it was time for me to start chemo again. The way my chemo worked was a whole lot different than a lot of typical chemo experiences, I’ve been told. Aside from being treated with arsenic, I also went in for chemo five days a week. Four weeks on, four weeks off. So every day, Monday-Friday, I would go from Brooklyn to Manhattan, sit in a room, get pumped full of arsenic, and go home. Every day of chemo, I had either my dad or Troy with me. These dudes, I tell ya. They’re unreal. If for any reason one of them couldn’t be there, Kelsey or Joe would step up and go with me. I would die for these people. But after all the shit they did for me, if I ACTUALLY died for them, they would be so pissed.
I’m sick of talking about arsenic. So let’s talk about those seizures, shall we?! In addition to my normal arsenic chemo, I went in for a few rounds of spinal chemo. For that, I would get a spinal tap. They would take some spinal fluid, do some tests on it, and then inject some different chemo stuff DIRECTLY INTO MY SPINE. I can’t wait for people to talk about how insane and primitive these kinds of treatments were like 50 years from now. I only mention the spinal chemo thing because it directly relates to my seizures. Don’t think I forgot about our next topic! I surely did not. My first couple of spinal chemo things went perfectly fine. No issues, other than getting literally stabbed in the back. The one I had in February? Different story. I had already been back to work, so I was hyped because I was making money again, and getting out of my apartment on non-chemo months.
Since it was February 13th, and Troy had been doing something, he met up with me when I got out of work so we could just take an Uber home together. I remember hearing we were cleared to leave for the night. I went to put on my coat, get my backpack, and head to the elevator. For some reason, everything looked… swirly? That’s the only way I can describe it. Everything looked swirly. Like when you look through the windshield of a car in the car wash? I don’t know. Don’t ask questions. Just go with it. I got in the elevator. Walked towards the door. I saw two of my coworkers standing outside smoking, and I saw Troy standing off to the side with flowers. It was the day before Valentine’s Day, and my mans is the best. Of course he had flowers. He walked over to me and said “Hi! I got you these! Do you want to take an uber home?” To which I could only reply “ok.” I remember thinking “why the fuck is that what I just said? That’s not what I was trying to say. Why are my words not actually coming out of my mouth? This is super annoying.” For the rest of our time outside, all I could say was “okay,” or “yes.” But whatever I actually said when he asked me something, didn’t make any sense in the conversation. I kept looking over at my coworkers for some reason, and he looked at them too. He asked them if everything was okay at work, and they said yes. They realized something had since gotten weird with me. One helped me to the ground so I wouldn’t fall. She helped me to my side, and I started having a seizure. I could hear my other coworker calling 911. And then I remember nothing for a good minute or two. When I came to, I remember looking up and just seeing LITERALLY EVERYONE I WORK WITH STANDING ABOVE ME. It was, in a word, mortifying. All the people I work with just watched me seize on the ground. Hated that.
I was brought in an ambulance to the nearest ER. I’m going to avoid naming that one because I felt the whole experience HELLA frustrating. Troy took my backpack, found my insurance card and ID to hand them over to the people that needed them, and I was taken over to some testing areas. I’ve learned that when I have a seizure, when I come out of it, I just speak a whole bunch of nonsense. It’s like when a baby seems to be trying really hard to get an adult to understand what they’re trying to say. That’s me after a seizure. A frustrated baby. After some tests, they brought me out of a tube, and I could talk relatively clearly again. I was asking for my glasses, telling them who Troy was to me, and wanting to go back to him if possible. When I saw him again, all I said was “sup, baby?” And I could physically see the terror leave his face. We sat there and discussed what had happened a bit, and then a doctor came over to explain that I probably had a seizure, and that they were going to send me for some tests. We were there for about 15 hours. Neither of us really got any sleep. The nurses on staff were just SCREAMING the whole time. I fully understand that they are the night shift, and therefore, the night is actually their day, but god DAMN. When we finally left that damn ER, we went straight home and ate an entire pizza. That’s how we spent our only Valentine’s Day as engaged people. The pizza? Very on brand. The ER? Hard pass going forward.
“Rachel? I thought you said seizures. Like, plural. Did you have another one?” HELL YEAH I DID! In April! At a BBQ spot! And I didn’t even get to eat any BBQ! Criminal! After that one, Troy demanded that the ambulance take me to an NYU affiliated hospital, because then they would have ALL of my information on file. A truly masterful performance by the Big Cozebowski. (I’ve been watching a lot of 90’s wrestling lately I’m so sorry). They did a bunch of tests again to try and force a seizure on me while my head was hooked up to some stuff. Didn’t work. Because I’m not epileptic. I had seizures after spinal chemo, exactly 10 days after getting chemo drugs injected directly into my spine. So, we stopped the spinal chemo. SHUCKS! No more getting stabbed in the back for me!
May 10th was a HUGE day for me. It was my 100th, and FINAL DAY of chemo. I cried like a baby when that thing beeped for the last time. All of my nurses came in and clapped. They presented me when a certificate that they made themselves with a bunch of cat pictures. It was a certificate for completing 100 days of chemo. I cried even more. And then Troy, my dad and I went to a Mets game to celebrate the end of chemo. I honestly don’t remember if the Mets even won. I didn’t really care. Because I won. And leukemia didn’t.
I’m still taking “maintenance chemo” meds. When my doctor, who is truly wonderful and I’m so glad he’s the one assigned to me (because he understands how to interact with me and all of my morbid tendencies) told me I would be taking extra pills for a year, I was not pleased. He told me straight up that when I got to him, there was only a 5% chance that I would survive. Do you have any idea how insane it is to be told that to your face? I had a 5% chance of surviving, because my leukemia was caught so late AND it was the most rare form of it, and I’m sitting here on my couch writing a bunch of nonsense about all of it because so many people don’t understand what actually happened. I should be dead. But instead I’m wasting your lives with this garbage. What a whirlwind.
I’ll be done with those pills in July, allegedly. I also got a port installed in my chest after my first month of chemo, because the PICC line was hot garbage. So now I get stabbed in the chest every time I go in for bloodwork. I really love referring to my issues in weird ways. I get stabbed in the chest. I pee out extra fluid from my brain. I have a brain drain. It makes things seem less terrifying to me somehow. A lot of these things are genuinely terrifying. I just kind of… don’t let myself be afraid of them? But hooooo boy have I developed some new issues. I have actual panic attacks now. I haven’t been allowed to take my antidepressants since I was diagnosed, because they might interact poorly with some of my other meds. Imagine? Having cancer, a stroke, and two seizures, and then being told you’re NOT ALLOWED to take the antidepressants you were on before all of that? I’ll tell ya what… it’s not fantastic. But then some days, it is fantastic. Sometimes I just recap everything I’ve gone through in my head and I’m think to myself “bitch, how did you do that? How are you alive???” I have no idea. If I think too much about it, I don’t do well. So please don’t ask. When I meet someone and tell them about all of my nonsense, I spend most of the time consoling them, which seems weird. But it makes sense! I’ve told the story so many times that I have it down to 3 minutes, start to finish, including time I spend saying “no, it’s totally fine, I’m the one telling you the story so it clearly ends up okay.”
I’ve already written almost 5,000 words, and I’m not a writer. So, I am SO sorry you just spent so much time reading all of this. But I’m not sorry I spent so much time writing it. This was exactly what I needed to do for myself. Maybe it’ll keep me from spiraling out for a little while longer. Or maybe I’ll just do more random writing whenever I feel like it. If it means I can make fun of my husband somewhere other than twitter, I’m sure he’d love that. I just wrote my 5,000th word. Just now. “Now” was the word. And I know I still left out a lot. So I’ll probably write 5,000 more words to answer the dozens of questions I left unanswered. But also… feel free to just ask them. Because then I’ll have something to answer the next time I con Troy into letting me write. Okay, I’m done.
Troy ends his posts with “try this trick over the weekend,” but I’m not Troy, so I’m not going to do that. Instead I’m just going to say thanks for letting me get all of my garbage out, so I’m not staying awake way later than I should thinking about it forever.
– the artist formerly known as RageWynn