Updated: Apr 24
December 23rd, 2018
It has been two weeks and one day since I woke up in agonizing pain at 4am, and I still hardly believe this is happening to me. You check Facebook every so often a see a friend of a friend’s brother or dad who’s been diagnosed with the ‘C’ word, but you never in a million years think it’s going to happen to you, especially not at the age of 24.
Let me just start by saying, I’m in no way a writer and these few paragraphs may not make it past my computer screen. I truly think I made it through English classes because I can analyze a book and memorize an essay structure, not because eloquent words and creative sentence structures flow from my brain. This is simply, broken down to its very core, a way for me to express what’s going on in my mind and to hopefully be able to look back at and smile, remembering my crazy, scary 25th year of life.
I’ve been telling people that I really went big for my quarter life crisis which to me is funny and helps me deal with everything I can’t control, however I often find them looking at me sympathetically and saying “yeah, I guess so.” My sister is currently obsessed with the keto diet, and I’d like to think I’m starting my journey to the summer body with the chemo diet.
Backing up three to four weeks ago before it all began, I consistently complained that my stomach hurt. This I didn’t realize at the time, and with every passing pain, I thought hmm maybe a period cramp, maybe a potential food allergy. I’ll deal with it later. To make things worse, I have the chronic twenty-something bad habit of avoiding the general practitioner, dentist, gynecologist, bank, repairman or anything else that requires an appointment and a dose of effort. So with each passing moment, I’d voice “Guys I feel like I ate something weird” or “Man, my period this month is pretty horrible” never realizing that I was in fact complaining about the same, seemingly chronic pain. It’s easy to say now that I should’ve known better, however without the authoritative tones of my mom and stepdad, Rick, on the other end of the 4am international phone call, I still would probably not have gone to the doctor, hospital, medical professional, or anyone who could help.
Six hours into sitting in A&E at King’s College hospital waiting patiently on the night staff to pass the baton to the day staff, and I’m finally seen (woo!). This is followed by my initial diagnosis: mid-cycle cramps. Great. I’m that dramatic person who said their stomach hurt only to be diagnosed with what every woman suffers from, cramps. I text my friend Emily to say I should be out of the hospital in no time and should still be good to head out drinking on our favorite bar crawl of the year, Santa-con. She thinks I’m crazy for considering still going, and we agree to cooking a full English breakfast, which over years we have absolutely perfected, and watching Christmas movies.
As I prepare myself to walk out the door, my blood results come back with a hint of infection. It’s nothing that the doctors are worried about, but they’ll call in the surgical and gynecological teams for a second opinion. This I think sounds a little dramatic, but I’ll wait it out. Hunger has been creeping up on me all morning as I sit in the waiting room with one man who asks if I’m single or married and another who invites me to go to gigs with him and his brother over Christmas. A third man is added to the waiting room and insists I shake his hand while he introduced himself decorated with a golf ball sized black-eye and remnants of blood from the fight he’d just been in sprinkled across his knuckles. I finally give in and allow Emily to come wait with me because I needed to be fed and watered, and I was starting to realize that I might be in the hospital longer than I originally intended.
A nurse then guides me to a private waiting room away from the hustle and bustle of the a&e area. This I realize is now hour 8 of my hospital experience, and I feel like I’m moving up the ranks as I lay horizontal on a stiff, cold couch. The surgical team arrives and we’re in business. Further assessment takes place, and it’s decided that there seems to be something quite hard towards the left of my stomach. My friend Emily arrives with food, finally!, and as I get excited to tear into the snack pack she’s provided, the surgeon tells me I’m not allowed to eat. Buzzkill. I bargain my way into being allowed a few cashews and wait to be moved to the women’s surgical ward.
There I’m officially checked in as Bed 2, given a hospital bracelet and measured for hospital socks. Believe it or not, this was the first time in my life that my calves have been measured, and it was truly an experience. The gynecologist on call assesses my abdomen and disagrees with the surgical team, saying my stomach is “soft”, excuse me lady, and believes that there is nothing to worry about. It’s hypothesized that I must just have fibroids causing pain on my uterus. As things are looking up, I’m told that they’re holding me overnight to do a vaginal ultrasound in the morning. This I can wholeheartedly say is not nearly as exciting as you might expect it to be.
I lay there starving while Emily attempts to distract me with her storytelling of her latest adventures. Around 6 o’clock Emily and I are continuing to fight the nurses on whether it’s necessary that I stay in the hospital overnight, or whether they can just let me go home and come back in the morning for the ultrasound. This is not taken well, and I’m given a dramatic scolding that goes a little something like, “If you choose to leave, we’ll need to you sign papers confirming that you’re acting against medical advice.” Emily and I finally give up, and she offers to pop by my flat and pack me my first overnight bag of many. By the time she returns, I’m not in my hospital bed. In the time she had been gone, I was able to lobby my way into seeing the surgical team who agreed that I could eat, as they suspected that this was no longer involving my appendix. Before the team could finish speaking, the nurse had disconnected me from my glamorous saline drip, and I was scouring the aisles of the M&S simply foods across from the ward.
The rest of the night seems like a blur as my new roommate in Bed 1 returns from surgery, visiting hours end, and I attempt to get to sleep while watching the remake of The Jungle Book, Mowgli, on Netflix.
The morning was off to a great start. I munched on watermelon and Rice Crispies and awaited my ultrasound appointment. What I’ve realized is that no one is in a rush in the NHS. The most accurate metaphor I can think of is that it’s like waiting for a ride at Disney. You think you’ve finally made it to the front of the line, only to turn the corner and wait another hour through the next line.
After fidgeting around in my seat for a while in the ultrasound waiting room, I was finally called back. I suit up in one of those revealing-but-not hospital gowns and hope for some clarity on what the hell is happening to me. The fellow speaks out what she sees on the scan while a nurse acts as her scribe. This is when I find out that there is a mass or abscess so large on my left ovary that the ovary itself is not visible. Oh, and there is a dermoid cyst in my right ovary as well. While there needs to be further review by a specialist, the fellow’s immediate thought is that this is probably a rather large cyst that should be monitored with antibiotics. Totally fine by me! If six weeks of antibiotics with no alcohol is the course of action, I’m happy to have the cleanse because honestly, my liver is hurting a little too much from this holiday season.
I return to my little cubby surrounded by blue curtains and continue to find ways to pass the time while I waited on King’s to decide if I’ll be staying with them longer. Sadly enough, I never got to know the name of the girl in Bed 1, and actually the only interaction we had was her apologizing for making a weird sound while she brushed her teeth. Her, we’ll call him boyfriend, arrived when visiting hours had opened up, and they discussed getting Chinese from their favorite little spot once she was discharged. I sat listening in trying to imagine what I would want to eat if it was possible to get discharged that night as well.
A little while later, and the nurse is fishing in my hand for a vein to take blood from this time. I try to explain that I have one good vein, however that was the one attached to my canular and thus unusable. The nurses give me a “breather” as I’m annoyingly shaking too hard for them to stick me, and I collect myself enough in time for round two.
My cousin Chris and his fiancé, Charlotte, arrive at the hospital followed by my flatmate Coco, and we continue to wait on the verdict of whether I can go home. After my day spent with my own thoughts, I’m nearly running out of the hospital to get home and order ramen from my go-to spot. We take an Uber home, because safety first, and Emily joins us to hang out as we all try to restore a little normalcy back into our day. I tire quite quickly, shock, and turn in for the night as this is far too much excitement for me. As I settle in for bed, I feel myself arranging my body so delicately as if I’m going to shatter into a million little pieces. I can feel this big mass just pushing out of my stomach, and I know I don’t want to disrupt it.
The morning of the 10th of December felt like any other morning other than me taking the Monday off ill. Coco and I bopped around the kitchen making breakfast and hanging out. We decided that I was going to go on a strict anti-inflammatory diet, so Coco and I head out with a list that looked like it could cover a CVS receipt to get all the necessary items. Coco is looking at Epsom salts and muscle remedies while I’m a bit dazed at the side, letting her take control of the situation, which she did fabulously.
We get back to the flat, and Coco has remodeled our flower vase into a medicine timetable and has turned a wine bottle into a fashionable yet practical holder for her bath salt concoction. Coco prepares to head to Sketch with her mom, while I wait for Maria to come over with treats. Apparently, this is the way to my heart. I leave the kitchen for a second and come back to two missed calls from a No Caller ID number. Little did I know at the time, but literally any hospital number in London will come from this type of blocked number. It’s extremely frustrating.
I start to panic that this could only be bad news if the hospital is calling because we weren’t supposed to hear back on my results until Tuesday or Wednesday. I’m pacing around the room freaking out, and Coco tells me not to worry because it’s weird that they would be calling from this type of number, and if they did, they would definitely leave a voicemail. What feels like two seconds after Coco finishes her sentence, my phone dings: new voicemail. My heart plummets into my stomach, and I start to shake all the while trying to click play. Maybe the junior surgeon was just as nervous to leave a voicemail as I was to hear it because it went a little something like, “This is a message for Nicole. This is Dr. ______ one of the gynae doctors you met yesterday. Please call back on” followed by an incomplete number. This is all very convenient when you’re calling someone with really bad news and leave them no way to call back.
While I rush around the room to find any type of paperwork with any sort of number that might help me contact the doctors, Coco tries to calm me down. When I find the number, I’m connected right away like I’m the most important patient that needs the most immediate assistance. Given their track record, this type of urgency worried me even more. The senior specialist was on the phone with me immediately, trying to explain to me what was happening inside me. I hear things like AFP level, germ cell tumor, surgery, ovarian torsion, etc. while I try to write down the buzzwords that stand out in my mind. In the haziness of these words floating around my brain, I register that they’ve asked for me to come in as soon as possible for surgery. At this point I’m hitting peak emotion because up until now I had a cyst that was going down with antibiotics, and the only thing that was holding me back was not being allowed to drink. And honestly, I was pretty excited about having a mandated no drinking for 6 weeks for a good health and wellness cleanse.
I cry. Coco tries to be really operational, packing my bag and calling an Uber. I then call my mom first and cry to her too. At this point crying is pretty much all I know. She starts to book flights, and I hang up to recollect myself and call my dad. My dad’s a worrier and a few days into this hospital joy ride, I told him “eh I’m in the hospital but DO NOT worry,” etc. etc. I’m fine and all that jazz. That was when I was the healthy feeling kid in the ward watching Mowgli instead of the one crying over her lentils she’s just prepared for lunch. They’re anti-inflammatory you know! After I feel like I have my emotions under control, I call my dad and say it’s time to book a flight. I let my mom and him work out the details while I head back to my favorite A&E waiting room.
My next call is to my friend, Maria, who’s on her way over to take the next shift of babysitting me, while Coco was supposed to be at lunch with her mom. I cancel on Maria after she says that she brought snacks which might be one of the most heartbreaking parts of this story. I go down the line of calls and register that my cousin Chris and his fiancé Charlotte were coming over to make dinner after work. They’d told me to call before dinner if anything had happened during the day, and I was really surprised it was actually a call that I had to make. After the troops were rallied, Coco and I headed on to the hospital to take on the next challenge.
The waiting room was a totally different experience to my Saturday morning. I walk in, and the place is absolutely flooded with the afternoon rush of people. I’m also thinking that none of these people actually look sick, and are obviously well enough to wait, so are they all just a bunch of hypochondriacs? We’ll never know. Anyways, this time I feel extra special because the A&E nurses were ready for me. I head to the check in, and they have a big paper with my name on it to look out for NICOLE DEBUSK.
Coco’s mom rushes in and our party turns into 3. We sit in the waiting room chairs while the doctor is being paged. Not too far behind strolls in Chris. The very nice gentleman beside us scooted down for the second time to allow our group more room to sit and debrief. It turns out Chris has walked out of his office without telling anyone he was leaving, and we’re laughing and discussing next steps when Charlotte hustles in as well. The poor guy next to us shifts chairs again and allows us the last chair on that row. I hope he’s out there doing well and getting over whatever crisis he was in for.
One of the surgical team members from the day before comes over, and it’s go time. We move back to an A&E bed, and they proceed to take blood and hook me up to an IV because both food and water are out of the question from here on out. We’re all huddled in this little closed curtain area when the doctor asks everyone else to step out while she explains the serious situation that is happening to my body. We run through the details of the softball sized tumor situated pleasantly inside my reproductive organs, and the team is allowed back in. Hind sight asking them to leave was totally unnecessary because 1, they already knew all of those details, and 2, thin blue curtains are apparently not sound proof.
I get rolled out of A&E on my stretcher bed because I’m cool like that and living out my Grey’s Anatomy fantasy, apart from my being the patient rather than the doctor. However, I’m quickly turned right back around to be plunked into a wheelchair. The group walks with me towards the surgical unit, and I do my best queen wave to all the nurses who I thought I’d never have to see again. I’m baAAaAckkkk.
From here I wait, and I wait, and I wait. I’m told that I’m not allowed an IV drip to help with my crippling thirst because I haven’t been transferred on the files from A&E to the surgical ward. The day shift nurses turn to night shift nurses, and I wait. I’m still in my normal clothes, which by the way I’m not complaining, but I’m starting to think that it’s weird that I still haven’t been admitted. Visiting hours are over, but Coco, Chris and Charlotte are all still squished around me watching The Holiday and trying to relax, a little. The patients in the ward this time around are much more peculiar than my weekend experience. People are bleeding, crying, throwing up and yelling at the nurses. One patient stood out in particular who had some sort of Viking braids going on. She’s super angry with the nurses because she’s pissed off with the world. In due time I realize why she’s a bit upset.
Chris starts making a joke about the crazy lady and equating her to my wild and crazy sister, Sarah. Everything she does or says to the nurses, he turns to us and says “Okay, Sarah.” At the point when we’re all in and out of laugher, the nurse actually responds to the patient calling her Sarah by name. This coincidence was too much for all of us, and I lost control in laughter. Unfortunately for me, my laughter quickly turned to pain. Something is seriously wrong, and I’m needing immediate help. I don’t think I can wait until the morning as the doctors had requested for surgery. It feels like I need it right now. While I panic a little, Chris and Coco flag the nurse down, and he comes over with paracetamol. I tell him my pain is a 10 and that I have so far underestimated my pain, but yet, all he feels is necessary is paracetamol.
Chris gets angry. Turning to me, he sternly says, “Don’t you dare take that stuff,” and turns back to the nurse to continue, “The doctor from A&E has specifically told us that she’s allowed morphine if her pain gets too severe. If you don’t see it on allowed medications, you’re going to call her up and get it approved right now.” The rest of the scene is a little bit of a blur for me because the pain is so intense that I’m not aware of anything else going on around me. We now know that this is most likely when my ovary had burst, which I forever will tell Chris it’s from making my laugh too hard.
The next battle we face is that my visitors have long surpassed the visiting hours time period. I beg nurse Joyce to let them stay, and she gets uncomfortable and asks another nurse. The night nurses are crazy busy between patients which is my argument that my having a friend there is a way to have an extra set of hands. I waited so long to go to the bathroom once and couldn’t stand it anymore, so I mimicked the actions the nurses had done to unhook my IV, and I was free to walk. On my waddle to return from the bathroom, I find out Coco is allowed to stay for a few more hours, but Chris and Charlotte would need to stay outside.
While the two settle in at the hospital’s very own 24-hour Costa coffee, Coco tries to get comfy in the plastic chair by my bedside. I spent the next few hours with my arm hooked around Coco’s trying to get some sleep. Every so often I’d turn a little, or at least attempt to in what looked like my coffin, and Coco would just be staring at me in that sleep deprived non-blinking way. I’d see Coco text my parents who were on their flight across the Atlantic Ocean or Chris and Charlotte who were updating her on the latest characters lounging in the coffee shop at 3am.
Somehow the hours passed by between blood pressure checks, and I am ready for surgery. I’m feeling really antsy waiting on my surgery time, thinking “Will my parents get here while I’m in surgery? Will I already be out?” Little did I know that my surgeon had called in sick, and apparently no one else in the hospital knew the ins and outs of how they were supposed to perform the surgery. So there I am, still being starved and still waiting to find out what the hell was going on.
My parents arrive to the hospital around 8:30AM, and we share with them the news that we don’t know who’s doing my surgery and what is exactly to be done. They’re thrilled. We can’t seem to get anyone to speak to us to know what’s going on, so we wait. Finally, a Mrs. Dixit comes to speak to us. Fun fact: In the UK once doctors hit a certain level of specialization they drop the Dr. title and return to a Mr. or Mrs. title. Mrs. Dixit tells us we can either wait to see if either her or Mr. Bidmead can fit me into their theatre schedule that evening, or I could go private and have a guaranteed surgery first thing in the morning.
By this point my dad is back at my flat taking a nap, so we have to facetime him in to consult. He had made quite the entrance into the hospital, first asking them if it was a third world country with the state of my hospital ‘room’, and second, requesting that someone take his blood pressure because he’s about to become another patient. I was beyond embarrassed begging him not to piss off a person that could potentially be cutting me open soon. When we facetimed dad in, he’s totally knocked out by sleeping meds and is confused as to what’s going on, who he is, where he is, etc.
My dad and brother start to reach out to some friends from Hospital Corporation of America, HCA, to see if we can move to a private hospital affiliation in London that could schedule my surgery and therefore take my American insurance. Before you know it, one of the nurses is telling me I have a call on the surgical ward telephone. I wheel my saline drip over with me and take the call. On the other side of the phone is an extremely animated man who introduces himself as the CMO of HCA in the UK. He explains that they can move me and guarantee my surgery the following day, and I quickly accept because at this point I’m feeling frail and emotionally exhausted.
In the UK there’s a show called I’m a Celebrity. Get Me Out of Here! where they throw a bunch of celebrities in the jungle and have them fend for themselves. Once Dr. Bushnall and I had agreed that an ambulance transport would be coming for me, he said in a TV voice teasingly “I’m a celebrity. Get me out of herrrreeee!”
Once the decision was made, my mom started to deliberate on whether or not I should really be moving hospitals if there is a chance they could do my surgery today in this one. I get frustrated and emotional saying that I’m done making any decisions because no one can agree. We’ve hit a melting point. Mom goes off for a conversation on the phone with my dad, and the patient on the other side of the curtain says in a soft voice, “Hey. I’m sorry to be nosy, but naturally I can hear everything that’s been going on with you. Want to talk about it?” This woman was a godsend, and while I still don’t know her last name, I know that her first was Katie.
Katie got off her hospital bed and moved the little blue curtain between us to sit at the end of mine. She was in her second day of recovery after having surgery on a mass that had grown in her jaw. As a third-party outsider with no particular interest in the matter, Katie tells me that I should stick to what I’m doing and switch hospitals. If anyone knows what it’s like making difficult decisions regarding your body, she would. However, Katie also explained to me that she had had absolute incredible care at King’s and wouldn’t have wanted anyone else to do her surgery. With Katie’s advise to move, I confidently tell my mom that this is the plan, and we’re not changing it again because I’m running out of steam here.
Before you know it, our transfer vehicle is here with a stretcher (ha!), and I hug Felix, a.k.a. my favorite nurse who was supporting my choice to move to another hospital and say my goodbyes to the rest of the nurses before rolling out of there. The rest of the night passes as a blissful blur. We arrive to the new hospital, and everything is shiny and clean with staff who were ready to help. We were shown to our room inclusive of a massive couch, a mini fridge, a flat screen tv and my own bathroom with a glass sliding door. Not to mention, we look out of the floor-to-ceiling window to see that we have a panoramic view of London. I wasn’t sure if my mom had it more cushy staying in my hospital room or her room at the Ritz.
I flip through the room service menu longingly because I’m sure that they will probably not let me eat here either. The nurse comes in and asks what I want for dinner and I’m like, “who, me? This girl right here?” Little did I know that this would be the only regular sized meal that they would let me eat during my stay there. In hindsight I would’ve gone for the truffle mushroom lasagna rather than the chicken that I ordered. At the time I was thinking I didn’t want to overwhelm my stomach, but hey, the chicken was still pretty good as well.
My surgeon visits me to run me through my surgery the following day – Wow! I actually get to hear from the guy that’s chopping me open. I was so used to hearing from different messengers who could “escape for a moment” in the previous hospital, that it hardly seemed real that the surgeon would have time in his day to be able to talk to me. He then walked me through the surgery and all of the 'scaries' that can occur: damaging other organs, blood clotting, death. Looking back, I have actually gotten used to having to sign away those forms that go along the lines of “It’s alright if my doctor messes up the surgery and this horrible thing happens to me.” No it’s not alright!
I struggled to sleep through the night due to my anxiety for the following morning. Mr. Bidmead told me that I would be in surgery around 10am because I’d be the second out of his four surgeries that morning. 10am comes and goes, and I’m pacing back and forth in my room waiting for surgery. My poor parents sit there trying to calm me down, but I’m assuming the worst, imagining that this could be my last day. Then I start to wonder what is taking so long. Were there complications in the first surgery, and the person died? Oh no, he’s going to be in really bad spirits operating on me when he’s just had a death. Should I trust him?
I’m really good at freaking myself out. At this point my anxieties had anxieties. A woman walks into my room and tells me it’s time. I say goodbye to both my parents who are heading out for lunch to distract themselves and can visibly see the worry they’re trying to conceal on their faces. I don’t envy them for having to sit and wait either.
We walk across the floor to an elevator and go down to the second floor. I timidly ask the nurse if there were complications with the surgery before me, and she looks at me rather robotically and says “no.” The second floor is the whitest most sterile place I’ve ever seen in my life. I wasn’t sure if the surgery had already taken place, and this was the hallway to heaven. It was eerie, and to make matters worse, every doctor or nurse that walked by was in crisp, blue scrubs and would smile and say, “hello.” People never say hello while passing by each other in the UK.
I’m wheeled into the anesthesia room and am greeted by Mark and Neil (I think). I had met Mark previously and Neil was helping him out. They immediately start hooking me up to the anesthesia, and Mr. Bidmead stops in to say hi before surgery. Perfect! My opportunity to find out if there were any previous complications. I ask if everything had gone to plan in the surgery before me, and he laughed explaining that they all went fine. They simply decided to move my surgery last out of the four because it was the most serious, complicated one. This was really fun to hear as the anesthesia is already seeping into my veins. Mark asks me to think of a place I have always wanted to go but have never gone before. I said “Australia!” He follows saying that he really wants to go there too, so we should probably go together. Neil then chimes in “Mark! Don’t give her a nightmare before she goes under.” That’s the last thing I remember before waking up in recovery.
I spend 45ish minutes in recovery and am wheeled back to my fancy room. Over the next day I get floods of flowers and visitors coming through the door as I try and regain strength. My catheter is removed a day after surgery, and they ask me to use the bathroom for the first time. Surprisingly painful. The next big task: Showering. I think this was the first time I cried post-surgery. What I remember from this traumatizing experience was sitting on one of those little shower chairs I thought I’d never have to use, whimpering as water hit my injured body.
After robe-ing up post-shower, Coco attempts to style my hair for the rest of my visitors coming that day. Once she’s brushed my hair out and started a French braid, the day nurse came in and swiftly stopped Coco, deciding to take over hair duty. She braided my hair flawlessly and made me feel like a pampered princess (and presentable). I don’t know if the nurse will ever know how much that meant to me. The little things, right?
The next couple weeks of recovery was not nearly as entertaining and includes tactical maneuvers I learned to get out of bed, get up and down the stairs, and most importantly, how to live with my mother in a tiny flat in which neither of us leave the premises. Ever. Shout out to any mothers out there dealing with daughters because I know it’s not easy, and for my mom I can be the opposite of easy.
So I’m going to skip all of the boring parts of me stressing to do a stomach injection of heparin before my flight which now sounds really silly, but at the time I thought that this was life or death. I guess in a way with DVT and blood clotting, it was. Weirdly enough though, no one ever talks about DVT with flying. If anyone has a petition to sign for DVT awareness, let me know. It became my obsession for a good 5 days or so, and I believe I am now certified in DVT care. What you should know though is that I made it home successfully, despite the pacing up and down the aisles of the plane. You can call me a DVT survivor if you will. Next up, Cancer.
January 9th, 2019
Today was a hard day. Today is January 9th which consisted of 3 doctors appoints: 2 oncologist visits and 1 fertility visit. I had decided that I'm going to freeze my eggs. I thought everything with my fertility was coming together despite that problematic dermoid cyst I have going on in the right ovary. I was referred to Nashville where I met with a doctor who originally said he could go through the cyst and get the eggs in the back of my ovary if necessary. Sounds like a whole lot of fun, right? So there I am, sitting again in those awkward metal stirrups with my gown awkwardly open in the front, waiting for my ultrasound. I’ve allowed the resident to be in the room after she pulled me to the side to ask because I figured learning from experience is good, and by now I’ve dropped that shyness. She was in for a treat as well. My ovary decided to develop a second, even bigger cyst to complement the first, all of which had developed in the last week. This cyst is called a hemorrhagic cyst which has the ability to go away on its own which we’re hoping is the case. Of course, this has a potential of torsion, and I’m now starting to think everything causes torsion. How are people so active with all these risks I’m thinking?! But then again, I did climb a small mountain 3 weeks before going to the doctor with abdominal pain, so maybe just the knowing that it’s there is the real stress. For now, I sit, I wait, and I ride this menstrual cycle out.
However to end on a positive note, the real highlight of the day came from my dad. We were meeting at UT hospital for an 8am. As we had originally planned to drive to Nashville, my dad deemed it was necessary to get the car seat out of his car to be our chauffeur for the day. In mild frustration of not being able to be 45 minutes early instead of 30 minutes, dad decided to retrieve a knife from the kitchen to aid in the car seat’s extraction from the vehicle. When all else failed, he chose to cut his car’s seat strap because apparently that was the only logical solution. Post cut, he chose to jam the knife into the Christmas boxes sitting in the breezeway. RIP Frosty, the brave snowman inside of that particular punctured Christmas box.
January 17th, 2019
Woohoo I got my cycle. The cycle means things kick into gear very fast. My mom and I had the pleasure of driving through the dark fog this morning to make my FOURTH ultrasound at 8:15AM in Nashville. Thankfully the doctor has said hemorrhagic cyst has either burst, been replaced, or has morphed into a smaller simple cyst that is not estrogen driven, so operation fertilization preservation starts. Before I head back to Knoxville, my mom decided to stick around to meet with some wig technicians. They walk me through colors and textures of hair and cut off a few strands of mine for comparison. If you have ever purchased a MyTwin doll in the late 90s to early 2000s, that is exactly what this felt like. The only different this time, I hope, is that the head of hair they’ve “matched” mine to doesn’t come back as a gray mousey color. That was definitely not the desired outcome of 10-year-old me who sent off a lock of hair only to receive a doll in the mail with muted gray hair.
January 25th, 2019
This evening I finished day 7 of my fertility drugs. Little bruises are starting to form on my stomach from the constant stabbing which have begun to match my “good vein” for blood withdrawals in my arm. To be honest, it’s the first time I’ve felt truly hormonal since these bad boys have begun. I’m frustrated from the lack of response from doctors and feeling a little lost on what to do. I’m caught between a doctor who used to be nice and is now a little bit moody in my hometown, a seemingly incredible doctor who’s three hours away and therefore too far, and the ambiguity of other local doctors we may have to seek out to follow Sloan Kettering’s chemo regimen if this all goes to shit.
I'm feeling a little blue because I’m exhausted from planning. Schedule this appointment here, get blood work there, wait there only to realize you need more medication before the weekend or you’re out of luck. Honestly, either I’m making this entirely too hard on myself or looking after your own health is a full time job.
New York City and the whole Sloan Kettering experience was this week as well. This was the tie breaker that we were waiting for between doctor opinions, and we finally had our chemo conclusion. Starting in February I would begin three cycles of BEP chemotherapy distributed over a five day regimen. I also had the pleasure of having another physical exam, and this time my gown was more like a full wrap robe. Top notch over there in NYC.
Other noteworthy moments in the big apple included me finding my perfect wig. I now will have bangs which I’ve never been confident enough to cut myself. Stay tuned.
Going to bed to nurture and grow my little future children in that screwed up ovary of mine.
February 11th, 2019
It’s already February 11th somehow, and I have NEARLY completed my whole first cycle of chemo. Who would have thought? My current status sits somewhere between feeling high and feeling jittery. I’ve since found out that steroids throw a lot of side effects your way, and you’re not really ever advised on them. Side effects of steroids include: red face, swollen face, headaches, aggressive hunger, etc., and I’m really feeling it. I tell people that with the amount of pressure in my head I can barely focus or feel that my head could just pop off and float away at any time.
Green sticks are especially useful in these times with the red face. I salute whoever brought them to the popularity band wagon in the past couple of years. More on that later.
March 3rd, 2019
It turns out my patience for writing lately is a little non-existent. I’ve been lucky enough to have visitors left and right to keep me company, but it means I haven’t sat down to really take everything in – apart from the chemo drugs – Those, I’m very much taking in.
The last week has carried a lot of emotion with it. I started losing my hair, and I mean, quick. I can’t even think of a way to express what it’s like lose your hair because there’s not really much of a comparison. Take Veet or Nair for instance. If any of you women out there has tried these products you might agree that not all of the hair comes out upon first application, but quite a lot will.
Losing my hair felt as if I had applied Nair to my entire head. There were a couple days of a tingling followed by little baby clumps of hair that quickly grew to similar but giant clumps of hair. By the time Friday evening rolled around, my hair had locked into a dread-like bird’s nest that didn’t even fall onto the back of my neck without a hair tie.
The first day of hair loss I cried – Not because of the actual loss of my hair, but rather because my body was starting to physically show to the outer world what I was going through. Until then I had had the occasional mouth ulcer, weird appetite changes, and headaches among other things, but those were all hidden to the outside world. This was something totally different.
As silly as it might sound, Sex in the City has actually helped me a lot in my cranial prosthetic journey. Samantha helped me prepare for the fun side of things, although I’m still jealous that she had the whole city of New York to choose from.
Two of my very best friends, Kacey and Allie, conveniently arrived in Knoxville on Saturday, which allowed me just enough time to be begging to get what hair was left on my head off of my head. Next in town was my sister because she told me that like hell she would miss my Britney ’07 moment.
So in true ‘us’ fashion, we drank. Like I was doing that shit sober? To further set the mood we relied on the early 2000s, mainly Britney as inspiration. We chilled for a while in the comfort of the salon discussing wigs, dates, life, New York City, London and everything in between.
When we finally got the point where I was tipsy enough, my long-time hairdresser and favorite human of 14 years, Chad, asked if I wanted it shaved from back to front so it didn’t scare me at first. By this point I’m feeling all I’m a Survivor, Stronger than Yesterday, It’s Britney Bitch that I thought let’s just go for it and see what happens.
And so we did. For full documentation you can see my sister Sarah’s phone because the video is all you need. It does have a slight pause where she stops the action to take a selfie with me with half a head of hair, but then resumes moments later.
All in all I’d give it a 10/10 experience when it comes to shaving heads. I would definitely encourage beverages of the alcoholic type mixed with friends that love you no matter how much you resemble a thumb.
March 4th, 2019
I actually feel motivated today which is good, however sleep is quickly overtaking my consciousness, so I’ll try to make it brief. I have thought a lot about the incredible words that people use to describe me and how I’m handling cancer. Things I hear like “brave,” or “strong,” and even “inspiring,” I’ve been lucky enough to hear that a lot. However sometimes for me this is hard to respond to because I really have no choice in the matter.
It's a lot easier to be those words when your only option is to take those words on. I’m starting to feel like I’m in a really depressing action movie this week where it’s fight or flight, and I whine and say, “but do I really have to fight?”
I’m incredibly lucky. I’ve made genuine friends in the cancer hospital and have been able to hear about other people’s journeys on what they’re going through. There’s a certain level of camaraderie around cancer patients that’s quite difficult to explain, but it’s like you’re all connected on a different satellite channel and can just nod and smile, understanding all you need to know.
Recently a man asked me what having a port was like, and I told him what to expect. He was nervous about his first 5 days of chemo, and as it turns out, he was set to take the exact same course of treatment that I’m on. I hadn’t heard how the chemo was going for him until this morning. By day 4 of his treatment, his stomach was severely messed up, and he was unable to control his shivering while rocking himself back and forth in the waiting room. I sit there thinking “wow he’s got so much more to go.”
Although it might be different for every person, my first round of chemo was a cake walk compared to the aftermath of my second round. Day by day last week I could feel the energy being pulled strip by strip from my body – dementor style. I felt bad for my parents because I turned into a weak, glorified house-cat that could never decide if she was up for eating dinner.
At these points I didn’t feel strong or brave at all. I felt like I started to digress to a why me moment that I should never stoop to and became a little indulgent in self-pity. Crazy that chemo had the audacity to actually affect my body. An outrage really.
What I get excited for now are the good days in front of me and all the things I have to look forward to in the chemo short-term, and the London long-er term. My friend today actually said she had a guy to set me up with, and my response was “Does he like bald girls?” For me an actual serious question.
It actually does stress me out a bit to get back on the dating scene after all of this is through though. At what point do I tell a cute guy that I’m wearing a wig? If I match with someone on a dating app, do I need to tell them that I am actually bald now? Probably. Will people be able to tell this is not my real hair when I’m out with friends, or worse, will the wig accidentally fall off? Maybe I’ll just get tipsy and let that girl deal with the answers to these questions. Goodnight for now.
March 11th, 2019
I’m starting to create a habit of writing on chemo days, but I’ll take the opportunity whenever I have the time to do so. I’ve had a very seemingly normal week considering extreme pity I had for myself the previous week. I acted like a totally normal human being as normal human beings do and drank rose and truly by the pool while pretending to be a healthy little human. If only I could reflect that in my eating habits! This week I’m dedicating myself to health and exercise, so I shall report back next week that I did not waver when presented with queso and margs.
Anyway these last few days I had in Celebration, Florida were fabulous. Lizzie and I turned into complete grandmas and realized that this. Is. 25. If we ever, I mean ever, had the opportunity to have the Celebration house to ourselves in high school, we would’ve gone nuts. Our signature move at the time was this: Universal Islands of Adventure by day, the teen club or Downtown Disney by night. If I remember properly from the last time we were there, we had to get face paint no matter what. We even scored a lovely caricature in our face paint. That is a true work of art. Then you ride the rides as much as humanly possible. We fortunately had the hookup from our man Ronald who worked at the Hulk ride. He’d have us walk up and enter the front of the two-hour-line via elevator and walk over to the front row of the ride. Befriending an employee was a really happy accident that I suggest other people try. The perks will last you a lifetime of happy memories.
After the rollercoaster, the course of action would be to hit on two hot foreign twins and ask them to ride the dizzy cups with you. They do. THEN (this is the best part) you tell them to meet you at Universal’s teen club that night which you of course are using a fake ID to get into because you are unfortunately still 17 at the time. You keep them on Facebook for years to come and periodically check in on them to see how their lives have turned out, but more importantly, to see if they have maintained their devilish good looks. Much to your surprise, for being Belgian, they ironically turn out to be modeling cowboys.
When you fast forward 8 years you realize just how different times are. You fear Disney due to the sheer volume of children writhing with infection, and on top of that, you fear the Universal Islands of Adventure Hulk ride (typing the whole name because it’s just not right if you don’t) because you’re afraid your port will knock the roller coaster harness and send you to the hospital with a leaky/damaged vein. For all of these reasons, and not because I’m a washed up mid-20s-existential-crises-experiencing-woman, we avoid anything labeled amusement park, and instead enjoy all of the seemingly retirement home enjoyments that Celebration has to offer its aging clientele.
Looking back on the weekend, I had no idea how much this would mean to me, and how much it would lift my spirits. I’m lucky enough to have friends who know what I’m thinking better than I do and can either enter non-stop, 3-hour conversations without breathing or spend the next 30 minutes forgetting to say a word in the comfort of each other’s silence. To go along with my sappy note, I watched a really sweet, touching Netflix teen movie (because I can still enjoy those things at 25!!!) which had an incredible little song at the end titled Sunflower. I recommend all my people out there go watch the movie and tell me how much they loved the song. If you don’t, then just don’t message me because it’ll totally break my heart. I’m too attached, and I’m pretty sure this Lupron injection I had in my left butt cheek last week to suppress my ovarian function during chemo is totally messing with my emotions.
March 17th, 2019
Happy St. Paddy’s Day, and also happy night-before-last-round-of-chemo to myself. Tomorrow morning I have a doctor’s appointment followed by labs, anti-nausea drugs and steroids, an hour of fluids, an hour of cisplatin, an hour of etoposide, 15 minutes of bleomycin and another hour of fluids. It seems as though every time I go into the hospital that my port causes more and more problems when trying to retrieve blood. As the wise Zoolander said once “nobody makes me bleed my own blood,” and in my case, it’s quite literally true. My blood often times refuses to come out. Take last week for instance: First we try taking blood out with me sitting up, and then we attempt blood retrieval with me laying down. Because I can weirdly feel the solution going through my veins, we make an executive decision to try a new needle. Now that my poor nurse is officially traumatized by my port as well, we flush the new needle and attempt blood withdrawal. Finally, my nurse asks me to raise an arm in my laid down position and, bingo - she can use all that blood to paint me like one of her French girls.
In other news, I’ve just received three new wigs in the mail: fuchsia, lavender and cerulean. However, I have not decided which look I am going with in the morning and am too tired to figure it out now. I’m actually entirely too tired to even be writing right now. Goodnight.
April 2nd, 2019
Well, the last round of chemo was HARD. My Monday through Friday week of etoposide and cisplatin felt nothing short of electively pumping poison into my body. I would escape through people’s Instagram stories of their magical, beach-y Spring Breaks but also secretly envy them for being able to feel normal.
It’s pretty difficult to describe how exactly chemo feels, and I think in a lot of ways it’s different for everyone. The drugs pumping into my system never hurt, but it was the after effects that made me wish that the only pain would be the pumping of drugs.
They say chemo is cumulative, and in my case this was very much true. For some reason, it makes me think a little of the SNL skit about the alien abduction called “Close Encounter.” Through cycle one I was feeling more like Cecily Strong and Ryan Gosling – everything was all rainbows and butterflies. Come cycle three, and I’m feeling like Kate McKinnon having not-so-hot of an experience. I might as well have gone out of a big airplane toilet and dropped onto a Long John Silvers.
Half way through the week I got to a point where I spent the mornings getting ready to chemo whimpering to myself. By Friday I didn’t even have the energy to whimper. I felt bad that I wasn’t being as bubbly with the nurses and wanted to be my usually chatty self, but I felt all attempts at conversation from my side came out as confused and mumbled words. After a five to six-hour day, I would crumble back into bed where I’d spend the hours trying not to focus on the dizzying, burning-with-nausea feeling until I woke up and did it all again.
The weekend felt as though all of the chemo from the course of the week was stuck in my stomach on the intensive spin setting found on your average washer/dryer. I would struggle to sleep but wanted to be passed out so that I wouldn’t have to feel. If my life was a movie, this would definitely be the part where I’d click fast forward and pop the popcorn. My big boring accomplishments each day consisted of moving my butt from the bed to the couch, or being able to climb up the stairs, only to proceed to lay at the top for 10 minutes while I caught my breath.
Fortunately, all the bad didn’t last too terribly long, and I was able to resume a little bit of some normalcy in my life by Tuesday. From there on I was meticulous about starting each morning with a handful of pills to avoid any complications later in the day. *Stay in school, and don’t do drugs, kids*
Then came my very last day of chemotherapy on the 1st of April. I’m still waiting for the moment when my doctor says “April Fools!” and I get to go back in for more fun rounds of chemo, but for now I’ll soak in the happy post-chemo days. The morning of April 1st felt like every other chemo morning. I woke up, chose a wig from my now selection of 13, packed up everything I needed for entertainment, hydration, etc. and was off.
It was like the stars had perfectly aligned because all of my chemo friends that I would see from time to time were all at the hospital that morning. My friend Donny, known by his closer friends as Squeak, found me in the waiting room as he was leaving chemo. Squeak is an extremely country man who is always rocking a unibrow paired with a trucker hat and a plaid shirt. His signature move is bringing sausage biscuits to all of the chemo nurses when he comes in for treatment, and on that day, he brought me one. After Squeak had finished chemo and I still wasn’t in sight, he searched around the waiting room to see if I was around to say hi before leaving. THANKFULLY I was and got to see Squeak for hopefully not the last time, however he only has two treatment left, and I hope for his sake that he gets some time away from the chemo ward as well.
Then there was Nancy. Nancy is my OG, day-one lady. While Nancy is a long-experienced chemo goer, she had been in remission for quite a few years before realizing recently that the cancer had returned. Nancy sat across from me on my first day of chemo, which was the start of her first round since the cancer returned. I’ve only seen her once or twice since but was lucky enough to rekindle our friendship on my final day. She was in for her 5th treatment with her chemo regimen, I was in for my 21st. As crazy as it was, I’m pretty happy I had the fast track in the chemo ride, so I could return to normal activities. I have no doubt that Nancy is kicking her cancer’s butt, hopefully for the last time. She’s an incredibly strong lady.
April 12th, 2019
So apparently side effects will continue to continue nearly two weeks after your last easy day of chemo. Fun fact. My hands and feet are all tingly, ringing in the neuropathy, and my once full set of eyelashes are dwindling by the day. I hadn’t been considering investing in eyelash extensions but maybe that should be a thing I should look into.
On the opposite side of the spectrum, I’ve had a few little bright blonde hairs growing back where the older hairs were. Even more old hairs are falling out as well in the back of my head, so my current status is Cruella Deville shedding my skin to turn into Khaleesi. It’s pretty perfect timing with the Game of Thrones final season premiere in two days. I’m ready.
April 18th , 2019
It’s been an eventful week compared to the recovery time I’ve had over the last few weeks since my last day of chemo. The sun is shining, more and more friends are coming into town, and things are getting pretty good. I’m starting to feel “normal” again. Ish.
The biggest bothersome thing over the last few days has been my breathing. In New York, at first, I thought I was being overdramatic. I have a tendency to struggle with breathing anyway, or I’ll start to panic and convince myself that I’m struggling to breathe and feel weird that I can feel my heartbeat, and it really goes downhill from there.
One of the biggest reasons that I have written a detailed journal of my thoughts since the beginning of my cancer experience, if that’s what we want to call it, is so that if there is anyone who has the unfortunate/fortunate luck of being diagnosed with something similar, then I can share with them the details of my experience and what they should expect. What I would love right now is someone who’s had my same chemo drugs to tell me if my lungs will ever be normal again. Information online is unclear, and I feel like I’m sucking air through one of those Panera bread smoothie straws. In the meantime I’ll try out my phone a friend lifeline and see if I can gather any additional information.
So back to the eventful week, I had an MRI, a pulmonary function test and a doctor’s appointment. While I wasn’t thrilled to be undergoing another MRI in which I’m pumped with dye and sent into a slightly more human-sized toilet roll holder, I did develop a new technique which seemed to help. Once a music station is selected for your enjoyment, you view the loud cranking noises produced by the machine as a remix to the current song, and that you’re simply at a festival where this remix is more aggressive. When I closed my eyes, those extra noises almost felt like peaceful additions.
The last big piece of news that I found out this week is that I will be having my final surgery where I would have both my port and dermoid cyst removed next Tuesday. I’m going through waves of getting stressed out about it, to waves of just wanting to get it over with. I’m a little bit of a research freak, and while I’m currently supposed to be doing GMAT prep work, I have been googling the severe side effects of Bleomycin and the risks when mixed with anesthesia during surgery and now feel obligated to make sure they know to set my oxygen levels to 88%-92% and no more due to the risk of expediting life threatening pulmonary problems. With the anxieties I have now, I’m really hoping to look back on this and laugh at how stressed out I was.
April 22nd, 2019
It’s Monday night so I should be preparing myself for surgery in the morning. Instead, I sit in bed waiting for a CT scan of my lungs in the morning. I feel like I’m constantly spinning the wheel of misfortune and waiting to see which ailment my body will land on next. This time, my ovary is taking a back seat to my lungs.
I had some advanced lung tests on Friday, and all three tests came back abnormal. This is just the news I wanted to hear. I sit down with the pulmonologist to discuss what this means, and he starts asking me if I spend time around farm animals or tropical birds. Because my answers were no, I still have absolutely no idea how a farm animal or a tropical bird could affect your lungs. PSA for any farmers or rare pet owners out there, beware! We did have a few parakeets growing up (disclaimer: this was a very short period of time, and I did, in fact, disclose this to my pulmonologist), and I remember no signs in the pet store advising that owning such pet could affect your lungs. Petition to be signed for tropical bird awareness goes immediately behind DVT awareness.
The doctor proceeds to run through other questions and comes to the conclusion that we’ll need a CT scan of my lungs. He advises that it’s no big deal, nothing with contrast, and that I shouldn’t be worried. Well guess what? He called Saturday morning and left a voicemail to let me know that I would be having contrast in order to look for “something.” I’m not freaking out, you’re freaking out.
April 24th, 2019
So as it turns out, freaking out wasn’t totally wrong, and for that matter neither was randomly bringing up DVT awareness again. Come to think of it, I’m a little spooked out that I mentioned DVTs because I haven’t thought about that since January. I am now on my second day of being admitted to the hospital and am getting used to hospital beds, hospital food, needles and being woken up at every hour of the night.
I went into the hospital yesterday looking all cute, or at least I thought so, and was ready to take on the day. My mom asked if I wanted company, and I said “no, it’s only a quick CT scan.” I feel like I’m totally eating those words now.
The CT scan itself was, in fact, very speedy. However, things got a little tricky from there. The tech thought it was weird that I didn’t have a doctor’s appointment after this particular “type” of CT scan. This got me worried. When I asked why, she mentioned that the contrast usually highlights any blood clots present. Because of this, I was back to the waiting room twirling my wig hair through my tingly, neuropathic fingertips waiting on my results.
I was called back in and got the all clear good to go – It was a “woo” moment as they removed the IV in my arm, but that feeling didn’t last for long. The elevator takes my down to the first floor, and I received THE call from University Tennessee Medical. The next few sentences were pretty glazed over in my mind as I rode the elevator back up and sat in a waiting room while the pulmonologist made his way over to discuss the 3-4 blood clots found in my lungs, also called pulmonary emboli. Both my mom and dad made it just in time to hear the same news. He then called up my oncologist, and the two agreed that I would need to be admitted to the hospital.
My mom and I then found ourselves waiting for my glamorous hospital room in the hospital cafeteria, her with a wrap in hand, me with a chocolate, raspberry mixed froyo. After what seemed like a million years, we got the call that I’d be in room 872. We walked straight past check-in and settled in my room, questioning whether we did in fact need to check in or not and what we were supposed to be doing overall.
The next thirty minutes felt like the Avengers had been called to assemble and were all sent into action in my hospital room. I answered a patient questionnaire with my nurse, had an IV and heart monitor started, sat through both an echocardiogram and an EKG, and had additional blood taken.
I then saw four doctors: one gynae oncologist, one pulmonologist, one hematologist and one cardiologist. Another 20 some vials of blood were drawn, followed by a doplar/ultrasound of both my legs and arms. I didn’t sleep at all through the night, and I’m actually exhausted now so this will be completed tomorrow (hopefully with my discharge paperwork!).
May 2nd, 2019
As in turns out, I did a subsequent echocardiogram on Thursday morning, and the 4 extra blood clots they had found in my heart had already dissolved! Amazing news for the first time in a little bit. On the other hand, my idea of going to the Dominican Republic and getting back to London anytime soon also quickly dissolved. I am now not allowed to fly for three months. This may or may not have been a ploy from my dad to keep me in the United States, however that’s a little morbid, so scratch that.
Come Saturday and all of us are drinking on the boat like we used to, and sure enough another drama takes place. This time it was my dog at the forefront. When jumping off of the boat, Bella missed her footing and hit her stomach against the dock. She immediately curled inward in pain, barely being able to walk. My mom rushed her to the animal hospital while the rest of us finish tying up the boat.
Rick stresses to me that he thinks the accident will either kill Bella or that she won’t be able to walk again, and my stress skyrockets as we pace around waiting to hear more from the veterinarian. Again, I’m brought back to the same fear of the unknown, and I think that’s by far the worst part for me. I like a course of action, a plan of how we’re getting from point A to point B once I understand what it is we need to defeat. For Bella, this was a burst in her bladder. She immediately was attached to an IV drip, was fitted with a catheter, and was awaiting surgery in the next couple of days.
When Bella returned from the hospital, I started analyzing her medication the same way I do with my own, and as it turns out, we shared a lot of the same ones.
Bella and I were both on the same nausea medication, and what I had been prescribed for neuropathy, another rather frustrating side effect of chemo, she had been prescribed for pain.
This made me giggle that between my dog and I, we could have our own little pharmacy. But now that she’s in the clear, I can’t help but think that Bella was just trying to empathize with me on a deeper level.
Dogs just know right?
May 5th, 2019
I was feeling a little sorry for myself today. I thought I was completely at the end of my battle when I was done with chemo, but I was slammed with the blood clots in my heart and lungs and still have seemed to manage to have lasting adverse effects.
After receiving the news that I’m not allowed to fly for three months, my dermatologist tells me I should avoid being in the sun because of a rare rash that’s developed on my back as yet another side effect of the Bleomycin. So now I’m not flying, not in the sun and left with assessing what my body has been through in the mirror. There’s the C-section scar from my original surgery, three round circles across my mid-section where questionable moles were removed before starting fertility hormones to freeze my eggs, a large scar on my chest curtesy of the lumpy, sore port underneath, a bald head with a few eyelashes that I can count on one hand, and this new “flagellate rash” that’s taken my back and neck by storm.
I’m frustrated my hair has barely started to grow back, frustrated that there’s no real cure for my weird extremely large rash, frustrated my port is most likely causing my blood clots while it still sits in my body, and frustrated that I think my blood thinners may be causing this difficult pain I’m getting in my joints and muscles.
While settling back into bed to work on some GMAT materials, I came across a post on Facebook that really resonated with me. A 24-year-old girl from Powell, TN died of a long battle with brain cancer two days ago. I scrolled down her page, Fight With Corbyn, and saw a snapshot into her and her family’s lives for the past year, and I couldn’t help but feel so stupid for pitying myself. I’m worrying about my future with thoughts about when I’ll be able to fly, when I’ll start my job back, when my hair will be long enough, etc. etc., but I know this is a “when” not and “if”, and for that I am so incredibly grateful. For the most part, the physical side effects and lasting issues I’m going through are temporary, so I’m going to put my big girl panties on, drop the pity party and go have a margarita.
May 31st, 2019
I’m in Austin, TX after a 15 hour drive. The goal was to get here for my friend Lizzie’s engagement, but I realized that there was no point in sitting around in Knoxville any longer, SO I have now been here for a week and a half. I was also going to leave Sunday, but since Janet and Rick are going to the Bahamas, I thought I would treat myself longer.
My hair growth is starting to flourish. I am constantly comparing my hair growth to other people I can find online that are posting their hair growth pictures. Mine is average at best. On that note, I tried to dress ~trendy~ yesterday and went out bald because Texas is too hot for that wig shenanigans all of the time.
June 10th, 2019
I have decided that I just attract rare medical conditions. The tumor? Rare. Blood clots in my heart and lungs after chemo? Semi-rare. The bleomycin induced flagellate rash? More rare. And this weekend, I found out that part of the catheter of my port had broken off in my superior vena cava vein and travelled down into my heart, lodging itself between the right atrium and right ventricle chambers. Nearly unheard of.
I’m sitting here with a bandage firmly attached to my aching neck feeling beyond grateful for my current health. In order for me not to drive 15 hours alone back to Tennessee, my dad volunteered to fly into Dallas and ride with me. With this news my sister decides to drive the three hours to Dallas with me and fly out to see her boyfriend in Georgia. Phoebe, one of my best friends from college, makes the drive to Dallas from Norman, Oklahoma because this is the closest we’ve been geographically in a year, and we both thought for that reason that we should meet for lunch.
We’re drinking mimosas, as you do on any given Saturday, and catching up on all things we’ve missed from our countless phone calls. We’re sitting on the outside patio of the restaurant, and it is HOT outside. The food comes, and I’m excited but overheated enjoying my first few bites. Then I get a twinge in my chest that feels like a butterfly is flapping its wings in the place of my heart beat. I jump up to go to the bathroom, and Phoebe follows to help calm me down. Given my health history, I’m just a little bit of a nervous-Nancy whenever something feels awry. Phoebe and I stay there for a minute, and I decided I was ready to come out even though I wasn’t feeling much better.
I try to continue to calm down at the table but then look towards Phoebe and Sarah saying, “we’re going to have to get to the emergency department now.” What I didn’t know then, but I do know now, is that Sarah and Phoebe are both extremely impressive in emergency situations. Phoebe closes out the bill and Sarah looks up where we can find the closest emergency department. Thirteen minutes later I jump out of the car while Sarah searches for a parking spot. I run into the ER, explaining to the nurses between my tears what the matter was, and I had just received a text from my nurse practitioner from home to say she was worried that my port may have fractured during sleep and started to move towards my heart.
The ER nurses quickly take my vitals and conduct an EKG. Then they move me back to room D41 where I see Dr. Norris. Dr. Norris was the first of many doctors at Baylor Sloan and White that would calm my fears. Because I was so rattled during my first EKG, they ran a second one. This showed that my heart was mimicking the feeling of atrial fibrillation. Still, Dr. Norris felt that this could still be nothing to worry about, but that we would run a CT scan due to my history of blood clots, however he sees no signs of me needing surgery whatsoever.
Waiting on the gurney for my CT scan was somewhat comical in the ER. We were lined up like we were vehicles stopped at a traffic light. There was a girl in her late 20s cradling her dog, a guy in his early 30s who looked like he’d had a sports related injury and an older man who just looked tired. I have my CT with contrast, which always gives you that just-peed-your-pants feeling and was rolled back to my room to await my results. I’m not entirely sure if this was before or after, but Phoebe and I decide to go to the bathroom together while my dad and Sarah wait in D41 until further notice. Phoebe and I go into a single bathroom together, and she immediately starts vomiting from a mix of anxiety and a hangover. Apparently not everyone is as used to hospitals as I am. All I can do is laugh because I’m peeing, she’s vomiting, both our wigs are off, and my heart is still geeking out by the minute. It was the perfect (memorable) way to reunite after going a year and a half without seeing each other.
To give Phoebe a break from the hospital, Sarah and Phoebe head to Sprinkles which may be the best cupcake store in all of the land. My dad and I sit waiting for the results, but Dr. Norris has already said that he thinks I’m having a panic attack, and if that’s the case, then my dad and I can still probably get on the road to Knoxville soon. The results come back, and they’re not what Dr. Norris expected. It looks as though there is a piece of the catheter from my port inside of my heart, and I will most definitely need surgery to remove it.
June 12th, 2019
The stress levels kicked up a notch as I was moved to the heart and lung hospital of BSW. My dad paced around the room while I settled in for my four day stay. Phoebe and Sarah both choose to stay in Dallas, and we try to figure out a way to contact my mom and Rick who are on a flight from their sailing trip in the Bahamas. The rest of the day seemed to go extremely fast, and before I knew it, there was no one left in hospital room 208 except me. Phoebe, Dad and Sarah were roughing it in a nice hotel nearby, and I was popping both Xanax and insomnia medication to help my heart make it to the next day.
Rosie, my favorite night nurse there, came into my room to see if I needed anything, and we ended up chatting for what felt like an hour. We discussed purpose and what was the reason for all this and if there was any. Trekking through this crazy journey has brought me so many high points and so many low points, but I truly believe that there is a reason, and there is a purpose. I just read a meme that could not be more perfect than right now saying, “I feel so bad for my guardian angel. She is probably stressed out like a mf.” Yeah, I bet that girl is really hitting peak anxiety right now. I can’t keep away from the hospital, and it seems to constantly be the consequence of me having a good time. Going to New York City? Here’s some pulmonary emboli to enjoy when you return. Visiting Austin? Why don’t you see what a catheter lodged in your heart feels like.
The next morning I had an echocardiogram while Phoebe sat there awkwardly. The woman asks if I have breast implants, and I’m sitting there thinking, “if you’re telling me it looks like I have breast cancer too, then I’m really not having a good day.” She said nothing more on the matter, so I’m going to take no news as good news. Phoebe had to get home to study for the bar exam, and Jolie swooped in from Austin with a comforter and a floor fan to take the next shift.
Sunday is mostly a blur because I spent the majority of the time stressing about my surgery. Dr. Stoler, the interventional cardiologist, had explained to me that I would be the third slot for surgery because he wanted to “warm up” with a few stent surgeries on the first couple of patients before my surgery. They were basically batting practice before the big game, and thankfully, the big game went well, or I wouldn’t be sitting here typing this.
I was advised that the potential complications were that the catheter could nick something in my heart, thus causing the need to aspirate the peritoneal wall around my heart, or that they would be unsuccessful in retrieving the broken piece of catheter intravenously, and then I’d be taken straight into open heart surgery. To do the surgery this way, Dr. Stoler would have to thread a larger catheter (~10 fr) through my internal jugular vein via my neck or through my groin depending on where exactly the catheter was now. Seeing there was a room of people, and I was awake, I sent up a little thank you to my guardian angel that we’d be going through the neck. Once this was chosen, he would then ‘lasso’ or ‘snare’ the broken piece of catheter in my heart and pull it up into the larger catheter to pull it out through my neck. I told my friend Zack this, in which he responded, “Man, it’s so good that you’re in Texas! Best lasso-ers around.” I used that joke for far too long afterwards to make light of the scary situation and most definitely claimed it as my own.
Jolie, Sarah and I spent the rest of the day hanging out, while my dad spent most of the day on his version of the iron throne (toilet) due to his extreme anxiety. Having had a stent put in his heart in the past, he was likely going to end up in the hospital room beside me, so I thought it best that he get some space away from the hospital. We were still trying to tackle the Sprinkles cupcakes purchased by Sarah and Phoebe the day before, so we insisted that Marg, my favorite day nurse, take a cupcake home to her three-year-old daughter. The following day I requested she show the cute cupcake-eating pictures to anyone with eyes, and I think that at a certain point, I started to freak Marg out too.
My mom flew in at 6:30PM after having the travel story from hell, including sleeping on the airport floor and then driving home instead the night before. Although she deserved a good night of sleep more than anyone, her and my sister both knew I was anxious as anything for my surgery in the morning, so they both ended up sleeping on the pull-out couch in my hospital room. They both even managed to sleep through my blood getting drawn out of my wrist, and my blood pressure being taken constantly throughout the night. When the morning came, my mouth felt like the Sahara Desert seeing I wasn’t allowed food or water after midnight. To make matters worse, I think that my anxiety was drying me out even more by sweat volumes. At this time I also realized that I still hadn’t taken a shower, and I was probably starting to confuse people.
Around 10:30AM the time came for the big game, and I was begrudgingly wheeled back to my potential doom. I cried and said bye to the fam, and then pulled my shit together. The surgical nurse scanned my heart with a live ultrasound to determine if they would need to get to the catheter from my groin or neck, and determined we’d be going through my neck. Dr. Rozzo, the fellow, and Dr. Stoler showed me on the life-size ultrasound machine where the catheter was in my heart and how they were going to get it out. It was a whole 6 inches of fun. Dr. Rozzo numbed my neck with some lidocaine. Dr. Stoler jumped in when the time was ready and pulled the catheter out in probably less than 10 minutes, dangling it in front of my face like he’d just caught a big fish. In my drugged up state I asked him for a hug, and then was wheeled out to greet my family.
The rest of the day I wasn’t allowed to eat or drink in case they were able to fit my second surgery in to remove the rest of my port, so I napped until Lizzie arrived from Houston. My dad and sister had left to have lunch and to shop, which apparently turned into my dad having some ‘tequilas’ because I guess that’s a little more manly than saying he went for margaritas with the girls. When Dad and Sarah returned, Dad had a new little outfit on. He says he had to purchase new clothes because the clothes he was wearing before had been on him so long that they could “stand in the corner on their own.”
Dr. Rozzo enters the room to see how I’m doing and ends up telling us his plan to move to Milwaukee after he finishes his fellowship at the end of the week. Keep in mind, I still have my heart monitor on during our little chat. Marg comes in the room after Dr. Rozzo leaves and savagely calls me out, saying that she and the other nurses had noticed that my heart had been beating normally until Dr. Rozzo came by, at which point my heart to leapt up to the 100s. I tried to play it off saying it was probably from the pain in my neck associated with talking more, and she nodded and grinned saying “Uh huh. Yes, of course.” I mean, I have to admit that it was a fantasy to meet a hot doctor going through cancer treatment, but I think that it must be a little bit of the uniform effect.
Lizzie stays as long as possible, but like Phoebe, she’s also stuck on a tight study schedule for the bar exam and leaves around the time that I’m told I can eat again because my surgery was being pushed to the following morning. It was 8PM at this point, so I ordered all of the food possible on Favor and snacked on cookies delivered by my sister’s sweet guy friend while waiting for my sushi. Talk about that heart healthy diet.
I’m back on the NPO diet by midnight and wake up to do the surgery dance again in the morning. This time, it was Dr. Grimsley who was doing the honors. The anesthesiologist, Dr. Katz, told me it was fine to do solely local anesthesia, and so we proceeded with that plan. An oxygen mask was placed on my nose, and I wake up what felt like seconds later completely out of it. For some reason, they decided to put me fully under, I’m just not sure why that is.
June 20th, 2019
It seems as though I’ve finally gotten all of the sticky residue off of my body from the heart monitors and the scars left behind are beginning to fade. My dad told me that the neck scar from heart surgery looks like nothing more than a pimple. I’m thrilled with this because pimples are so aesthetically pleasing.
I’m consistently having weird dreams regarding my health, but the most unfortunate one is my hair growth dreams. Two nights ago I woke up in my dream and, amazing, my hair is already shoulder length! I’m all up on my high horse thinking I’m proving all of those hair blogs out there wrong. Then I actually wake up and am gravely disappointed at the generous quarter inch of hair growth on my head complimented by a rather bald patch in the front. Although I’m not pregnant, which I’ve only had to state to doctors a total of 15 times, I’m considering jumping on the prenatal vitamin route and see how that aids my hair growth.
July 8th, 2019
It’s my 9th day back in the United Kingdom. I’ve already purchased a new rug for my own happiness and a plant ironically called “angel wings” that feels as soft as my fuzzy, little head.
My first day landing in London felt like the past 7 months had finally come full circle. It felt weird to me that so much time has passed, yet being back felt like it had only been days since my whole health adventure started. Coming from the person who didn’t cry much through surgery and hospital visits, I now see a special on the TV about someone telling their cancer story and start to tear up, not because I’m upset by my year so far, but rather because I feel relief that everything is, hopefully, over.
I think I cope with things much like Chandler from friends sometimes. I would rather make a joke out of it or make light of the situation, saying that maybe I should buy a lottery ticket, but being back has made me realize that some things won’t feel routine or go back to normal easily. I’m not sure if other people feel the same way I do, but my anxiety will start to take over at the most random of times, and I’ll all of a sudden feel like I can’t breathe.
I’ve made a bad habit of traveling somewhere and giving my parents a call to come meet me in the hospital in any given place, so I’m really trying not to make this anymore habitual than it already is. I don’t think my dad will be able to handle flying somewhere so quickly that he forgets he needs a change of clothes, and I think my mom has run out of Ambien to help her sleep on the hard, plastic couches in my hospital rooms.
While sitting here contemplating either working out or helping myself to a second cup of coffee, the episode of Friends plays in the background when Rachel moves out of Monica’s apartment which is the “end of an era.” For me and for now, I believe this is the end of an era, a chapter, and a journey that has taught me a lot, but that I would not to be thrilled to revisit. With a splash of therapy and a few months without any health issues, I think I’m going to be just fine.