*I apologize for formatting. I am learning how blogs work. I am a failure of a millennial I tell you.
Things that happened Friday, March 11th: I went to class, I went on a date, and I got a
boyfriend.
Things that happened Saturday, March 12th: I got a pedicure, I got a bikini wax, and I found out I had cancer.
It happened in that order, in a John-Green-only-writes-this-shit kind of order. It sounds so made up and blunt, and just writing it makes me cringe, but it happened that way. On the bright side, I was hairless for the doctors and my toes were looking dope.
For the past couple of months, I had felt a weird swelling in my neck. It began in
January, and I noticed it when my teacher put her hands on my neck (she wasn’t being
aggressive, she’s a voice teacher, and it was very gentle, I swear) and asked me if I had a cold. When I said no, she pointed out that it felt like either my lymph nodes were very swollen or I had some major knots in my neck. And since my throat was clear and my nose wasn’t running, I assumed it had to be the latter. So I went on with my life. I got a virus sometime in February, which brought me to my university’s health center, an event that let me take the opportunity of asking a doctor about my swollen neck. I was consoled with the information that it wasn’t swollen lymph nodes, it was probably just muscle tension or knots. So life was rocking; I got a nice Z-pak and I was all better.
And when I say life was rocking, I mean it. School was the best it had ever been. I felt like I was really understanding my acting training, more than I had in the past, and I was meeting new, amazing people. I was (kind of) seeing a guy I really liked, and I was on top of my work in all my classes.
Which brings us to Friday, March 11th. I slept through my alarm that was meant to get
me to my 8:30 AM class. It was one of those times you really did hear the sound of your phone annoying you to get up, but part of you just didn’t care enough to physically oblige. It isn’t like me to miss class, I love my classes almost too much. (I’m a nerd, I’m down with it.) I didn’t beat myself up about sleeping in—everyone has those mornings. I got myself to my next class on time and with a smile, I was ready to begin my day. I had an amazing day of classes, so when my required classes were done by 2:30, it felt like five minutes had gone by. All I had left was an optional class at 5:00, which I was of course going to, because if I haven’t mentioned: I love class. A lot. Like so much. So. Much. And how can I not? I am studying to be an actress at NYU Tisch School of the Arts. I have it made, as they say.
March 11th also happened to have been a beautiful day in New York City. One of those
days where the already adorable dogs seem cuter and the city simultaneously decides to wear only dresses and shorts. So I wasn’t upset when I had a frozen yogurt date during the break between classes.
This part is about to get a little romantic, so if you’re anything like me where you want to
vomit and cringe at romance, skip ahead!!!!!!
We walked holding hands (how gross) in the streets of New York City and sat down for
frozen yogurt. We talked and ate, and it felt so natural and easy. So natural and easy, in fact, that I almost didn’t hear when he introduced the idea of us being boyfriend and girlfriend. (Vomit. I know.) I genuinely didn’t know what to say—so I didn’t. I left with an I don’t know. Because I didn’t.
Regardless, we walked back to our next class, hand in hand, (so, so gross) and had our
next class. I was leaving to go home for spring break that night, so I bid the boy adieu but I told him I would come say goodbye before I left for Penn Station.
Then, I grabbed dinner and ice cream (#springbreakbikinibod) with a pal, Evan. As we were returning to the dorm, I impulsively decided to say goodbye to my date from earlier and answer his question. I made my way to his dorm room and walked in without knocking because I apparently lack the quality of respect for privacy. I awkwardly made my way to saying I would very much like to be his girlfriend, and then I rushed to Penn Station with my best friend, Kristina, who was joining me on vacation, for a train we ended up missing anyway.
Eventually, Kristina and I arrived at my home. My mom picked us up at the train station, where she mentioned my brother already being asleep in his room. This was the first I was hearing of my brother being home. And normally, this would be an average thing to discover en route to my house, but I actually hadn’t spoken to him since mid-January. We were not on good terms. I didn’t take the news that he was present in our home well, either. My body reacted with instant tears. My brother and my’s lack of communication was something I thought about a lot. I ended up getting into an emotional fight with my mom, crying myself to sleep, and fearing what family dinner would be like Saturday night.
Saturday, March 12th. Woke up and successfully avoided running into my brother. My mom and I seemed to have forgotten our fight from the previous night, (that rhymed) and she took Kristina and I shopping. Kristina got an outfit for her 21st birthday that we’d be celebrating in Florida, I got a bodysuit/shorts type of garment, and my mom even treated herself to some new pants. After that, we all waxed where we needed to be waxed (some things are better left private) and got manicures and pedicures. We had to rush home because my parents had an appointment, but we were feeling South Beach-ready.
Not long after Kristina and I were settled back home and beginning to pack, my dad came in to remind us that they had an appointment. (Which of course we remembered.) For some reason, and there are people in this world that might call this fate, I took this window of opportunity to suggest to my father that I get a neck massage. With this, he looked at my neck with suspicion and recommended we go to Urgent Care after his appointment. He wasn’t majorly concerned, just wanted to be safe before I flew to Florida the next morning. And I agreed; there was no harm in getting it looked at. Maybe we could get antibiotics to reduce the swelling.
With that peace of mind, Kristina and I decided to nap. It was a lovely nap, the kind where your mind is awake but your body is getting the rest it needs. My father peered his head in the crack of my bedroom window. He asked if I was still interested in going to Urgent Care. My body wasn’t thrilled at the idea, but I felt myself say I was ready to go. I told Kristina I’d see her later, although she was half asleep, and my father and I were on our way.
We sat in the car as we often do, talking about nothing and everything all at once. He had me search for Urgent Care’s hours, to be sure we would make it on time. It was about 5:20, Urgent Care closed at 6:00. We were doubtful.
After driving into the wrong parking lot, (real smooth, Dad) and finally pulling into the correct area, the two of us walked into Urgent Care. I filled out some forms and we were told to sit and wait. The form process was a new thing for me, being 18 and all. I am used to my parents taking care of everything with doctors and what not. But once the seven in the second digit place turns to eight, the law says I am in charge. And for those of you who know me, you can imagine how scary that is. And for those of you who don’t, I give you permission to imagine how scary that is.
After playing an uncomfortable game of who-can-hold-eye-contact-longer with the little girl two seats away from me, my dad and I were led into an examination room. Now would be a good time to state that I am not, nor have I ever been, good with a) doctors, b) needles or c) anything related to the two. So naturally, I sat on the examination table just delighted to be there. A woman with a heavy accent came in to “do my vitals”. (****Fun drinking game: each time I say vitals, take a shot.) What does it mean to do your vitals, some of you (if you’re anything like me) may be wondering? Well, call me Casey Landman, M.D. By definition, vitals are the organs of the body (such as the heart, lungs, and liver) that are needed in order to keep living. And according to my extensive research (one sentence into google) to do one’s vitals is also called taking vital signs, which are “clinical measurements, specifically pulse rate, temperature, respiration rate, and blood pressure, that indicate the state of a patient’s essential body functions.”
Since your eyes glazed over during that portion of my writing, let me describe in my words how it is when your vitals are taken. A person (who I am never sure if they are a nurse, doctor, human, or foreign celebrity) comes in with a machine on wheels. He or she will ask you to hold out your arm and will velcro a blue band around your upper arm in order to take your blood pressure. He or she will nine out of ten times warn you that it may feel a little tight around your arm, but will promise that it will be over soon. I swear I can hear the blood pump through my veins each time this part occurs. It always makes me tense. They will then put your finger in a rubbery device that I cannot tell you the purpose of. Although I would guess pulse rate. They will also take your temperature using a thermometer that must be beneath your tongue and still ask you questions as though you can answer them. Such fun vitals are. Now that we are caught up on vitals, we may move on.
And so, this woman with a heavy accent came in to take my vitals. After that, she asked me a few questions. Why am I here? I explained about my neck. What medicine am I on? Any allergies? Penicillin. And so on. Post medical interrogation, she asked me why I hadn’t gone to get a cat scan. My dad and I exchanged a puzzled glance. A cat scan? My dad was quick to shoot this down. Why would I get a cat scan? But the woman pursed her lips and insisted that that is what we should have done. And while my stomach knotted with nerves, I saw my dad see me inwardly freak out. Which caused him to roll his eyes at this woman’s clear obliviousness to what protocol for this neck situation was. This comforted me. Because both my father and I are professional doctors who studied pre-med at Harvard. So really, who did this woman taking my vitals (you should be significantly buzzed by now) think she was?
Finally the doctor came in. She asked me virtually the same exact questions as the woman before, but this time got physical. She felt my neck, asking if it hurt where the swelling was. And to the touch, I felt discomfort. I shared this with her, and she nodded while pulling out her stethoscope. I took deep breaths (something my acting training has made into being incredibly natural) and awaited her recommendations.
She asked for clarification that I was leaving the next morning for Florida. I nodded, feeling tears prickling at my eyes. She nodded somberly and said, “I would go to the ER to get a cat scan.” “Tonight?” My dad asked. “Yes,” the doctor replied.
By now, I was full on crying. The doctor left the room to get some sheet of paper that we would need, and my dad grabbed my hand. He assured me I would be okay. Everything would be fine. I would be fine. I asked my dad, in all my paranoid glory, if it could be cancerous. He waved that away with such confidence, a part of my heart felt better. (But we know how this story goes.)
My dad, being the honorary boy scout that he is, thought of the brilliant idea of calling one of our family friends that worked at the nearest hospital in hopes that we could get seen faster. After all, I hadn’t finished packing for Florida! Time was a wastin’. My dad reached our friend five minutes before his plane was going to take off for Utah. Our friend told my dad before take off that he would call the hospital immediately in order to expedite my ER process. Again, we can call this fate. I definitely like to.
The doctor returned with paper of debatable importance and sat down at her computer. I asked her the same question I asked my father: could this be cancerous? She told me the cat scan would answer all my questions, which was not exactly the response I wanted. But, alas, through my waterfall of tears, my dad and I got up and headed to the car, off to see the oracle that they called a cat scan.
The car ride to the hospital is a blur. Here are the facts I know about the 10 minute ride to the ER:
1. This is the time period I realized I would need an IV for the first time in my life. (Needles. Cool.)
2. My phone was at 7%. (I’m a millennial. Sue me.)
3. I could not see through my tears at all. My vision was 100% blur.
4. My mom called to ensure she was meeting us at the right hospital.
And before I knew it, we were in one of the many parking garages of the hospital underground. My dad and I held hands into the elevator, all the way through the Casey Pavillon (that is a legitimate name of one of the hospital sections. My dad wanted to take a picture.) and to the waiting room of the ER. (There was a charging station for your cell phones here. My priorities were straight.)
My dad and I filled out a quick form and took our seats. It was maybe 6:30, and already I was bored of the filling-out-forms game. My mom walked in frantically and gave me a hug, something that never fails to make me cry more.
Not long after, we were moved into a smaller room with a nurse prepared to take my vitals. She gave me words of pity and comfort as she watched my tear stained cheeks continue to be drowned in tears. She wrapped a fun yellow wristband around my right wrist and sent me into the chaotic world we call the Emergency Room.
It’s funny, really, that we call it the Emergency Room. For a place devoted to emergencies, it moves at the pace of a place devoted to watching paint dry. I waited there for a while and then they put my IV in. I cried so hard, and I squeezed my mom’s hand. The entire time, the nurse named George kept telling me to relax and not to cry. Because it always a good idea to tell a person in distress to relax. Good plan, George. Good plan. They also took my blood. I was the happiest of campers.
Once the IV was in, my tears did not stop, nor did the waiting. No one really would tell me what was going on. My parents sat next to me and I told them about my day with my new boyfriend to distract myself. My dad was on his phone, I think his little girl being in the hospital talking about boys was a bit too much. Topics changed and my mom kept calling my brother and Kristina to make sure they were alright at home, keeping them as updated as possible, but I was still scared.
George the nurse came back and rambled off some things that could cause the weird swollen lymph node, possibly mono.
My heart sunk.
No.
I. Could. Not. Have. Mono. Poor David!!!! (My boyfriend of one day, not even.) I would feel so incredibly terrible if I had to deliver the news to him that he could potentially have mono. That made me cry even harder. He had dated me for a second and now this? Ugh. It can’t be mono.
After a really long time of waiting, crying and desperately trying to distract ourselves, it was time for my cat scan. They told me it would be short in duration but they would need to inject me with fluids for an IV contrast. Which, essentially, would make my insides light up so they could see what was going on inside of me. And a cat scan is just a very special X-ray machine that looks like a donut with a tongue.
A man named Tim wheeled me on my ER bed over to the cat scan area. He was very cute. (Dramatic events do not blind me from the obvious.) My mom asked if she could come in with me, but that wasn’t permitted. My parents told me they would be right outside the door when I was done. I couldn’t stop crying.
The man in charge of the cat scan was very kind. He explained to me that I may feel a taste in my mouth once they inject the IV contrast, and that my body might feel warm all over. He said I may feel those effects, but I also may not. I cried more, (shocker, I know) I was just freaked out by everything going on around me. It was all so overwhelming. I felt like the white walls were drowning me and my head against the hospital pillow was shrinking.
He helped me onto the cat scan’s motorized platform and told me where to put my arms and legs. Don’t move, he told me several times. If you move, he warned me, we have to do this all over again. Close your eyes and it’ll be over soon.
I kept my eyes open. I was too scared of the unknown to create a bigger unknown. I listened to the sound of the cat scan machine and waited anxiously to feel side effects. My waist down became very warm, and made me feel like I had to pee. It almost made me laugh. My mouth tasted like Purell, the same taste I get when the doctors flush my IV with Saline.
It took five minutes, like he said it would, and Tim the hot ER bed driver returned me to my corner in the main ER room. I was proud of myself, the worst was over. Or so I thought.
No one tells you how terrible it is to wait.
To wait without a time to stop waiting.
To wait without knowing what exactly you will get once you’re done waiting.
More waiting. Lots and lots of waiting.
Was I still going to Florida tomorrow?
Waiting for cat scan results.
George told us it wasn’t mono. What a fucking relief.
Waiting.
Waiting.
We had nothing but time, so my dad went home to check on Kristina and Josh, my brother, and to grab chargers or snacks. Whatever we needed to pass this eternal waiting.
My dad was gone for a good amount of time, and the waiting was in full pause. I kept asking where he was, sometimes a girl just needs her dad’s presence along with her mother’s to be safe.
George the nurse went home for the night. He gave me an awkward goodbye and wished me luck. A doctor from before appeared at my bedside with a clipboard.
The doctor was in scrubs. He had someone next to him. A lot of the following is a blur, so please bare with me.
“Your cat scan results came back, and they are abnormal. We suspect it is lymphoma.”
I asked what lymphoma was. I had no idea. My instinct was to look at my mom to see how she reacted, to know how I should react.
This was not my wisest decision.
My mom’s leg began aggressively shaking. “Can we wait for my husband to be here, please? He is on his way back. Can we wait, please?”
I began to cry.
My dad came back I don’t know how soon after, and the doctor, my parents, and one of the very kind nurses all talked in a corner out of ear shot. I watched my mom turn her tear stained face away and my dad protectively place his arm around her shoulder. I texted my friends not sure what was going on. I looked up the word lymphoma. I put my phone away.
I didn’t know what was happening. I was just crying to cry, I didn’t even know anything. I wish I could articulate the state of not-knowingness and shock I was in. It didn’t even register to me that I could have cancer. That I probably had cancer.
I wanted someone to give me answers, but I wanted to know absolutely nothing. I wanted to go to Florida. I wanted Kristina to be able to fly home and not be stuck with this weird change of events. I wanted David to have a cancerless girlfriend. I wanted mono. I wanted to be able to go to school when spring break ended. I didn’t know anything. I didn’t want to know anything.
They admitted me to the hospital that night. I got my own room with a roommate named Christina. My best friend’s name. My parents stayed by my side. I wasn’t alone. I have never felt more alone.
The next week or so was exhausting and quite honestly, a time I do not want to relive. Kristina stayed in New York for spring break. I had various blood tests and had a biopsy. My brother and I were talking. He canceled his spring break trip to Europe to be with me. Some apologies don’t need words. I was discharged. David stayed the week of spring break along with Kristina. I gave him at least five outs of our relationship. He told me he signed up for all of me, even the scary stuff. I tried to accept that. I had a pet scan (where they couldn’t find the right vein for 293847294 tries, mind you) and found out my official results of having cancer and the staging of it. I met with a fertility doctor as an 18 year old girl. I heard all of the side effects of all the chemo. I met with many doctors and many nurses in many hospitals. I had my closest friends with me the entire time, some who flew out from as far as California to be with me. I cried so much. I laughed so much. I made so many inappropriate cancer jokes that I really should be locked away somewhere.
I’m writing this blog in hopes of helping someone. Someone with cancer, someone without. Someone loving someone with cancer, someone interested in cancer. Someone bored of doing their science homework and wanting some entertainment. I don’t know who I can help, or if I can help anyone. If I am going to go through this, with my family and friends, I want it to have as much purpose as it can. It is so personal and weird to be sharing everything, or almost everything, I am going through. But I want so badly to remember what happens, so things aren’t all a blur. And in the process, I want to help someone. Feel free to read on, or don’t. It’s also for me. It’s also to help me.
Day 1 of Treatment: Chemo – First Cycle
March 30, 2016
I was awoken at the pleasant hour of 6:00 am. It took me a moment to realize what kind of day I was waking up to. Ahh..my first day of chemo, that kind of day. I felt my mom whisper-ask me in my half-asleep state if I wanted to shower this morning. (I would need her help as it was incredibly difficult to shower with my three biopsies [two on my lower back and one on my neck] and two incisions on my left chest [from my center line])
Before I go on, I think it is important to explain what a center line is, as it will come up many times in the future. cancer.org states that [center lines] are used to put medicines, blood products, nutrients, or fluids right into your blood. They can also be used to take out blood for testing. There are also different types of center lines, but I use a port, one of the best center lines to use. (Hair flip)
So basically, my center line gave me an incision, referred to from now on as my port, that is a small drum made of plastic or metal with a thin tube going from the drum into a large vein. Ports are permanently placed under the skin of the chest or arm during surgery. (thanks cancer.org!)
But, no, thank you, I told my mom. I did not want to shower this morning because I did not want to feel helpless and childish as she scrubbed me down in the shower. As an 18 year old girl having her mother bathe her, there was not a shower that went by that I didn’t cry and apologize for having to make her do this. Even though deep down I knew she would do it for me no matter what, my humiliation was enough to blind me from that. But I just left it at no thank you instead of including all that reasoning.
I got myself out of bed after asking for “ten more minutes” (fifteen more minutes…twenty more minutes…etc) and got ready for the day. My mom put numbing cream over the area of skin covering my port, so when it got accessed (more description on that later) I wouldn’t feel the needle. She covered it with special tape, and that part of the preparation was done.
Then, my mom and my dad were packing bags filled with things that we can do if I get bored while doing chemo (I will sit there for hours) and I sat at my counter reading my phone in awe. So many people had begun to text me, Facebook message me, Instagram direct message me, (I’ll explain that one to you later grandma) and call me with words of good wishes and telling me I could do this. I was blown away. I couldn’t believe the amount of people, some of whom I hadn’t spoken to in years, who had heard about what was going on and were reaching out. I didn’t even know how to respond to any of them. And before I could, my parents were at the door and ready to go.
I began to cry. It’s just unfair, I said, guiltily knowing that sharing that information helped no one. I don’t want cancer. I told them that. I told my parents I didn’t want cancer, as though they didn’t already know that. As though they wouldn’t take it away if they could. But I told them I don’t want it. I felt my freshman year being taken away from me, even more so, a part of my life. And there are times where I am able to look at this experience in a more positive light, dare I say a learning experience, but not right now. Right now, it was unfair and I did not want to have cancer.
I could visibly see my dad’s heart melt and my mom’s do the same. They both rushed over to me, and my tears exploded even further. A heavy cry, a purposeless cry, the kind you do as a child when you don’t want to get into the bathtub. You cry and you cry and you know you’re going into battle, or into the tub, regardless.
Before I knew it, at 7:45 am, my parents and I were sitting in a chemo therapy room. The rooms are nice. They have a skylight and a TV, a bed, chairs for your visitors (my parents) and lots of machinery hooked up to the walls. My nurse, Jen, came in and asked me a bunch of questions that I’ve been asked one million point seven times before. Jen was really nice. She talked to me like a person not an infant, something I feared would happen in a pediatric hospital. She joked with my parents and was clear with what was going to be happening.
She told me she had to access my port. So, using my non scientific jargon, she will have to stick a mini needle into my skin covering my port. The needle is attached to a bunch of tubes that allow drugs to be injected and blood to be drawn. It’s essentially a live-in IV in my chest that I’ll keep in there until my treatment is over.
Frantically, I asked if I could take a painkiller and give it some time before we access the port, because the part of my chest where the port was placed was still incredibly sore. (the surgery had only happened that past Friday) This particular painkiller, Oxycodone, happens to make me very loopy and relaxed, so I mean I really couldn’t see the harm. She said of course, we never want you to be in pain. Although there was something or other about not relying on Oxycodone too much. But yeah yeah yeah, I could take it. And so I popped an Oxy and felt myself relax. I tried responding to people who had reached out on the phone but the more the painkiller hit, the sillier my texting abilities became. Also, a grown man dressed as a cowboy, who Jen the Nurse referred to as Cowboy Bob, came in to check my vitals. He did not speak. I was either super high on my painkiller or pediatric hospitals are freakier than I thought.
Eventually, Nurse Jen came back to access my port, for real this time. I had my mom hold my hand and I put on some music (I happen to be veeeeery proud of my “gettin rdy” playlist on Spotify #shamelessplug) Having the port being accessed hurt less than the first time it was accessed, (for my cat scan two days prior) but still wasn’t enjoyable. But once it was done, I was hooked up to Saline and my day was beginning. I asked if I would be starting the actual Chemo soon, and Jen told me probably not for a while.
By 12:00 noon, I was still hooked to saline, my labs had been taken (aka taking my blood) and I had met with many teams of nurses and doctors. Cowboy Bob had been in and out to collect my urine, still with no dialogue. I was very overwhelmed by the amount of people I had to respond to. I was beyond grateful for the amount of love and support I was getting from friends and family all over the country, but I was stressing myself out with getting back to them instantly. My Nurse told me I have no obligation to answer anyone, I have enough going on. Which on an intellectual level I understood, but morally felt unappreciative and wrong.
One of my best friends, Kristina, was my very first visitor at chemo! (I never know if I am supposed to capitalize that or not. Bare with me.) Unfortunately for her, her hour visit was 40 minutes of me sleeping and 20 minutes of me half sleeping. I thank my lucky stars to have met her. She’s basically a Landman now. I hadn’t started the actual chemotherapy yet, but having her there made me feel much more at ease.
Soon after she left, I got my first chemo drug. Brentuximab Vedotin. I call it Robitussin because I can’t pronounce the real name. I’m not really sure why. The nurse told me I should try not to go out to use the bathroom during this drug, so naturally I really had to go. She allowed it as long as she could accompany me so we had a nice field trip to the bathroom.
One of the scariest things about being treated for cancer in a pediatric hospital is seeing the children younger than me, smaller than me, balder than me. For all I know, they have it much worse than me. And here I am, crying before leaving for the hospital about how unfair having cancer is. But then, another part of my mind says: Casey, you are allowed to be upset. You have cancer. Even if the doctors says Hodgkins Lymphoma is the cancer to have if you are going to have cancer, it is cancer nevertheless. But the other part of my brain says to me, you could have it much worse. And this not-so-unfamiliar back and forth continues until I’m inside the safety of the bathroom door clutching onto my wheely machine that holds my chemo and saline. I do what I gotta do to see Cowboy Bob again, and I return to room 28, my chemo therapy room for the day.
Before I know it, I’m onto my next drug. Doxorubicin. It makes your pee orange or pink. Mine ended up being orange. I was hoping for pink as orange is my least favorite color and pink is my favorite, and also orange is not too far from yellow, but it’s cool. You win some you lose some. Ammiright. The chemo itself looked like kool-aid, but something tells me if I were to drink it rather than have it put through my fun port tubes it would not taste like kool-aid.
That went by super quickly, I think that drug only lasts like fifteen minutes or something, so I was halfway done!!!!! Wooo!!!!!!! Then, I waited around and answered some text messages. Maybe I fell asleep? I don’t think so, though. I don’t really remember.
Nurse Jen kicked out my parents real quick because I’m 18 and had to answer questions and because I am so adult and mature and sophisticated, they had to leave. She asked me if I partake in drinking, which I answered honestly. With friends, at parties, but not by myself watching the Notebook cuddling a bottle of Pinot Grigio. (Not that that sounds too bad, to be honest.) She asked me about smoking: cigarettes, marijuana, etc. I’ve never smoked a cigarette. And I never really had to answer the weed part, because she made it clear that it can conflict with my pain killers and maybe make it hard for me to breathe. She asked me about sex, and the dos and don’ts of being sexually active while having treatment. I am so very happy my parents were not in the room, but Nurse Jen was very cool and made the whole thing not weird. She was just obligated to share and ask about those fun, intimate topics. My parents came back and I could feel all of us just wishing Cowboy Bob would visit.
I was then moved to the inpatient part of the hospital. Normally when you do chemo, (I say this as though I’ve been doing this for ages. It is my first day. Hahahhahahaa. I am not a seasoned chemo treated girl.) you do it outpatient. Meaning, you go to the hospital in the morning, leave to go home when you are done with treatment, and come back the next day to do your next day of chemo. (and so on for as many days as planned.) Inpatient is being admitted to the hospital, so that you can be closely monitored during the chemo. We decided to do inpatient for the first three days of the first cycle just to be safe. Which was wise, because…………. (cliffhanger)
I experienced side effects! Oh what fun! Once I was in my hospital bed and had briefly met my roommate (this beautiful 12 year old girl named Emma who was dealing with shit way worse than me. My heart goes out to her.) and my cool nurse (she was so funny and our senses of humor vibed well together) I began to feel nauseous. Now, I’m sorry if you don’t like to talk about nausea, but it just so happens that that is a HUGE part of chemo. I had heard doctors talk about anti-nausea meds and being on top of it and all that, but it did not sink in until I was sitting on my hospital bed feeling “weird.” I kept saying I didn’t think it was nausea, (probably wishful thinking) but I definitely felt weird. Wrongo, Casey. Wrong, indeed. It was nausea you silly girl. And we know this from watching dear old Casey slump over a yellow bucket, calling the nurses to put anti-nausea medicine in her port as soon as possible please, and watching her father who hates vomit leave the room. Goooooooooood times. But lesson definitely learned. I take anti-nausea medicine around the clock now.
The rest of the night is pretty much a blur.
I can’t really blog about my next two days in Chemo because they are seriously so scattered in my brain, but here are important things I feel I can share:
-David, my boyfriend, visited me on Day 2 at nighttime and stayed with me until I fell asleep, despite having an 8:30 class the next morning. He is the best human.
-Daniel, my nurse for Day 2, was the BOMB DIGGITY. He was so funny and kind, and I want to be friends with him and if I am ever inpatient again, I pray he is my nurse.
-Day 3 was emotionally horrible and the first day I had no visitors. It was a really hard day. I don’t necessarily want to reflect.
Day 4 of Treatment: Not Sure What to Call You
April 2nd, 2016
Today I don’t have to go to Chemo, but I do have to go to the hospital for some shot that helps my blood count stay high. So close to being free of you, hospital!!! So close!!! (The doctors and nurses are incredibly nice. I’m just a jerk.) But first, I have a lovely meeting with my therapist. One of the chemo medicines I have to take in pill form has this really cute side effect of intensifying my emotions and moods (similar to becoming a vampire on The Vampire Diaries, for those of you CW fans out there.) so this should be an interesting session. After that, I am going to head over to the hospital for the shot (mmm my favorite!)
And then, (this is actually something I’m really proud of) I’m going to donate my hair. Since I will no longer be needing it, I’m really excited to give it to someone who wants a wig when they no longer have hair themselves. I supposedly loose my hair sometime during the second/third week of my first cycle, which we are now in the first week of, so now is the best time to do it. I think my mom wants to cut her hair too, not for donation because she doesn’t have long enough hair, but in solidarity. Or so she says. I think she’s just lookin’ for a new do. (due? doo? dew? You know what I mean.)
I’m sitting in bed writing because I have been on and off sleeping. It was my first night back at the apartment, and I was an emotional wreck. (Thank you chemo pills.) I just can’t stop thinking about the fact that this is real. That I have cancer. And despite the absurdly amazing support system I have, I often feel so alone. I know that is such a cliché, to be surrounded by love and still feel isolated. But it really is how I feel sometimes. People keep calling me strong, and brave, and all I am doing are things I have no choice but to do.
I am experiencing some of the side effects they warned me about. It makes this shit feel so much more real. When they were reading the actual insane amount of side effects that probably won’t but very well could occur to me, I didn’t know what to think. I’ve been up since like 5 am after a night of tossing and turning and weird, very weird, dreams. I have no appetite. I just had to take seven pills this morning, and at least eight left to go. If I haven’t mentioned before I am not a good pill taker. It takes a deep breathe of courage and about a gallon of water in order for me to take Tylenol. But, you do what you have to do, and my parents are helping me find tricks to make it easier.
My incision really hurts and I’m not sure if I am paranoid or perhaps it is infected. While undergoing treatment, you aren’t supposed to shave your body hair but since my counts are up and it’s the first two weeks (eventually chemotherapy will remove my body hair [and my hair hair]) for me, so I am allowed to shave. Judy said she would help me. Nothing like some mother daughter bonding time, ammiright?
I mentioned that my mom wants to cut her hair along with me today. I brought it up to her that she has to be sure she wants this new hair cut. Every time, and I mean every time, she has cut her hair, she has hated it. She complains, she regrets it, as all women (me included) who love their hair do. But I confided in my mom as she awkwardly shaved my legs for me. I told her, and warned her that this was selfish, that this time is different. I can’t have her complaining about her hair when I will be coming to terms with having none. She took my hand and promised me she would never, ever do that. She wants this hair cut and would never complain about something of the sort when I’m going through this. I made her promise 23984234.3 times out of paranoia, but eventually felt a weight lifted off my shoulders. It was selfish of me, but I knew I would regret saying nothing.
Now I sit waiting for my therapist to arrive. I’ve found that texting people, about anything at all, stresses me out. It makes me anxious. People are so curious, well-intently, but it makes me want to scream. It is a common response for me to say “I have to go, I’ll talk to you later.” I don’t know what I’ll talk to my therapist about. I’m not sure what I can articulate about what I’m feeling. Even in writing this blog, I feel like I am sharing facts rather than feelings. Maybe there is a part of me that doesn’t feel anything.
My therapist appointment went fairly productively. It feels like a blur. I don’t know if that is because I am currently exhausted, or because I was crying for a lot of it. Regardless, my parents and I talked out some things we all need to work on with these changes. We went to the hospital for a super quick shot (not the kind you take after I say vitals. the painful kind.) where we all discussed Cowboy Bob. He is such a polarizing figure, that Cowboy Bob.
Then, my mom and I were off to cut our hair. My mom decided against cutting hers super short in the therapist appointment, something that really threw that weight on my shoulders into the wind, and I was so excited to donate. Sometimes it takes doing something good for someone else to feel better about yourself. That’s kind of selfish, but I could be selfish in worse ways, I suppose.
I thought that this would just be a happy visit to the hair salon, but it wasn’t. It was a chic, shop on a European looking street. I walked in, put on a robe, (this place was so legit) and headed upstairs to donate my hair. The woman cutting my hair, Maria, welcomed me to her chair. She told me she would take the donated part of my hair off now, without it being wet, and then wash it and fix it up. My stomach tightened—already????? But I nodded as she put my hair in a pony tail in preparation to be cut. My mom sat beside me, smiling with excitement. We predicted where my hair would fall, and once I was happy with what the length would probably be, Maria began to cut. Simultaneously, I began to tear. It was just weird to think that this would be my last hair cut for so long. A part of me was just like, fuck it, should I shave it now and cut (haha pun) the anticipation? I listened to the sound of the scissors hitting my ponytail to the feeling of my muscles tensing. She released my ponytail and set it on the table. My hair fell right under my chin. Maybe I’ll put in pictures if I ever figure out how blogs work. I loved it. I loved it loved it loved it. Which only made me really cry. I would have this haircut for maybe, what, a week? And then it would be gone. And for a really long time I thought worrying about being bald made me petty or unappreciative of the amazing treatment I am fortunate enough to receive, but the truth is, hair makes people feel beautiful. Boys, girls, men, women. We all appreciate our hair. And it hit me in that moment that no matter how much I love the way my hair looks, it will be gone in the blink of an eye.
I’ll work the baldness, that I know. I’ll get some cool ass scarves and wear a bold lip color and walk into places with confidence even if I have none. I promise, I will.
But in that moment, I couldn’t remember that part of myself. I felt so helpless. It really was only a moment though, because I loved the way I looked right then and there and if I worried about how I wouldn’t like how I looked later in the weeks to come, I would’ve wasted this moment. That sentence confused me. But I know what I mean.
So we washed my hair and fixed up some funny ends, and I loved the way I looked. I felt so beautiful, for a second I forgot how temporary everything was. I took an embarrassing amount of selfies and waited for my mom to finish her haircut. (She looked amazing. And even the genius haircutter said he would not cut her hair short, so clearly I have a potential career in hair.)
My friends showered me with compliments on my hair and it gave me a confidence boost I think I really needed. The entire week had been full of texts filled with good wishes and prayers about my cancer, messages I beyond words appreciated, but these were about something a little more superficial, something I needed. It may be weird to want something superficial but I did. I don’t know, man. It felt good.
I came back to the apartment (which I think I’ll just refer to as home, now) and my fingers were just obsessively running through my hair. I had visitors come over and we played board games, threw in some morbid cancer jokes (those are inevitable with me. I would prepare if I were you.) and had an amazing time. It felt so normal, and just reminiscing on that night now makes me smile and feel like crying. (It could also be those emotion amplifying pills I have to take. Who knows.) David, my boyfriend, slept over (in different beds, don’t y’all worry) and we played Uno into the night. (That is not a euphemism, continue with not worrying.) He’s also my best friend so it helps having him around.
Day 6 of Treatment: Sinclair’s Birthday
April 4, 2016
I’ve found I am not good at being alone unless it is with me writing or reading. I’m sure people who do not have cancer can relate, but it is something I’ve found to be very true with me and I happen to have cancer. But my point is, I don’t think they’re mutually exclusive.
I have had many visitors come by these past few days. It is so awesome and a great distraction, but I feel myself becoming overwhelmed at times. I wish I could shut off the part of my brain that knows I have cancer and live my life as I normally do. Last night I broke down completely when Evan and Kristina, two of my best friends, were over. I felt so guilty but I couldn’t stop. I went into my room to “nap” and just cried. It felt so unlike me, I want desperately to feel like me again. And there are times where I do, but there are so many times where I don’t. My parents try to make it better. But the touch of a parent can often make me cry harder. I feel like a burden no matter how many times I am told I am not. (This is something Nancy my therapist tells me to work on. I am trying, Nancy!!!!! They say acceptance is the first step!!!!!!!!!)
Listening to people talk about studio, my acting training, is bittersweet. I’m hungry for information on what is going on in class but I want so so so so badly to be there. And when people complain about rehearsals and work, I totally relate because literally a second ago that was me complaining, but now a part of me gets mad because I would do all of that in a heartbeat. But that’s not fair of me and I know that. I get mad at myself for feeling that way. It is a vicious cycle.
Today is going to be a great day though. I am sick and tired of feeling badly and I’m going to make sure I have a good day. My goal is to let myself feel how I feel but not sit in it. One of my acting teachers gave me a game to play with myself for when I am upset called, “and this is what I want.” Basically, whenever I’m going through something upsetting or uncomfortable, i.e remembering that I will be losing my hair in the upcoming weeks, I say to myself: “I will be losing my hair, and this is what I want.” Sometimes it really works for me.
But today is one of my best best best friends birthdays! Sinclair!!!!!! I plan on sending her gifts to her dorm so just in case I can’t see her today she knows I am thinking about her day of birth. I love making people smile on their birthdays. Generally I like making people smile, but ESPECIALLY on their birthdays. I’m going to write her a nice long letter and it’ll be lovely and I am excited about it.
My mom’s friend Cindy (and also someone I consider a friend) is coming in to visit today, as well. I love when my mom’s friends visit. I just like listening to people talk sometimes, and it takes the pressure off when someone isn’t necessarily visiting solely for me. I think we’ll get lunch or brunch or something, (if I have an appetite, which I rarely do now) and that’ll be super fun. Then, after Cindy leaves, I think I’m going to go shopping with my mom. We are going to go look for some light, pretty scarves for when I don’t have my hair. I don’t think I’ll want to do the wig-thing. I don’t know why. Many women look absolutely beautiful with wigs, but a) I’ll be receiving treatment during the summer and it can get sweaaaaaty and b) if I’m going to have cancer and lose my hair, the best way I can come to terms with it is by embracing it. I’m not sure if that makes sense. But it dooooooooes to me.
My mom is currently showering and getting ready for the day, something I should do. I’ve already taken my medicine. My dad is at work. I am now just typing things that are true. One time in studio we played a game called two truths and a lie and I loved it so much. I am so excited for the finish line of this whole experience. I can’t wait to be a stronger person than I am now. I feel very weak sometimes. People keep telling me I am being strong, and that I am brave, but I am really just doing what I am told to do. I say this a lot. I hope I feel differently soon. I am rambling. I should find a way to style my hair because let me tell you: my hair drying naturally in a short hair cut is a sight. I will not put a picture of that.
I just yawned into a tissue. I’m losing my mind. (and my hair. ahhahahahahahahhahahahaha. yikes.)
My childhood summer camp director just called to check in on me and see how I was feeling. Ever since I was little I thought of him as a celebrity. That was such an interesting phone call. It feels like it didn’t happen. I don’t know why.
I am hungry but afraid to eat because I don’t want to feel sick at all. I rarely have an appetite. Hmm.
I am now wondering if I should put time stamps on when I write these one liners because I sound like a rambling woman.
I’ve decided against it. Too much effort. You may calling me the rambling woman, I don’t mind. I also realize my capitalization and grammar aren’t at their best. I apologize for those who cringe at improper grammar and what not. It is just not my priority. Blame it on the cancer.
People keep texting me very positive messages and encouraging thoughts. I want to feel the way people claim they see me.
I am now feeling the side effects of nausea. This is so fun. It is only the first week. I need to get out of the house but we are still waiting for Cindy, my mom’s friend.
She arrived. Cindy and my mom like to knit together, and they had been discussing knitting me hats for when I have no hair. Cindy is the sweetest woman, truly, she is so kind and generous. She brought me two bracelets that said strength and conquer, two beautiful words I wish could just dissolve into the veins on my wrist holding them and overcome me. She also brought me a hat. I tried it on with my cute new hair cut, and thanked her profusely for the cute purple beanie. I then had the idea, genius that I am, to tuck in my hair and try on the hat again in front of the mirror.
I was not ready for this.
My eyes looked sick. The bags beneath them seemed darker than they ever had. I looked like a girl with cancer. I am a girl with cancer. And I just so badly don’t want to be. I want to be healthy, I want to be out with Sinclair celebrating her birthday. I want to be walking the streets of New York City as a college student to one million rehearsals that I can’t keep track of. I don’t want cancer.
And I began to cry. And my mom saw it before I did, and Cindy saw it soon after, and they both felt incredibly guilty. I wanted to tell them it wasn’t their fault, that I just did that too soon. I excused myself into my room and here I am now. Crying and sniffling when I told myself I would be more positive today.
I want to be more positive. I feel like all I do is feel badly for myself and I can’t stop. This is so hard.
The image of standing in front of that long rectangular mirror looking like a sick girl with cancer is haunting me, and I am letting it. I don’t know what to do.
I napped. It was a good solution, it calmed me down. I don’t think we are going to go shopping today. My mom keeps trying to get me to eat something and I really just do not want to. I got some gifts in the mail today. People are so kind and I have never had so many stuffed animals in my entire lifetime. One of the stuffed animals is this huge British bear that is basically my size. (Not actually, but not too off) It is so huggable and squeezable.
I’m now sitting and writing. I don’t know if I want to go out today. I don’t know where I would go. I want to do something fun but it is already so late in the day. I am napping my day away and for some reason that feels like an analogy for this cancer and my life even though I know I am not dying and I am not going to die and I will be fine. I am a dramatic. I am an actor.
People are doing this thing called Relay for Life in honor of me. That sounded so gross to type and so narcissistic. “In honor of me” I’m not dead. But it is the sweetest most generous most selfless thing that people are doing for me. “The American Cancer Society Relay For Life event is a life-changing experience that gives everyone in communities across the globe a chance to Celebrate the lives of people who have battled cancer, Remember loved ones lost, and Fight Back against the disease. Each year, more than 4 million people in over 20 countries take part in this global phenomenon and raise much-needed funds and awareness to save lives from cancer.” (I can always count on you, cancer.org!) I can’t believe people, my brother included, are doing this with me in mind. It makes me want to cry good tears. (And I have. and I am. as I type.)
I am feeling really guilty about not going outside today. If I feel this lack of motivation on days where I have a good enough white cell blood count to go out in public in busier places, what am I going to do on days where it is best I am home and around few people? I don’t want these three weeks to be a waste of space. I don’t. I’m terrified of becoming depressed. I am a happy person. I do not want to be an unhappy person and I don’t know how to stop it from happening.
A commercial just came on about chemo, I didn’t even realize. My mom muted it. I realized. I’m exhausted.
I just read all of this up to now to my mom. I cried. I think I will make this public maybe. I don’t know.
I just had the nutritious dinner of McDonalds chicken nuggets and fries. After tonight I will be considered temporarily NutriPenic (I do not know if I spelled that correctly) which means no food from restaurants or the outside world so I’m going a little crazy. I want to watch a musical movie. Maybe Into The Woods. Tonight Evan and Kristina are coming over for a movie night, we are going to watch Brooklyn. I’m getting sleepy. I still have pills to take tonight. Arghhhhhh.
Fuck it. I am doing it. I am going to watch Into The Woods with Meryl Streep until my friends get here. I now realize that sounds like my good friend Meryl is stopping by to watch it with me. Ideal, but not the case.
Nevermind. I got a wave of tiredness. I think my family and I are going to have movie night and my friends are going to stay at their dorms. I just don’t have it in me to be energized, and even though my friends understand that I won’t always be me me, I feel an obligation to be regardless. I know, I know. Stop that, Casey. Stop that.
I wonder what movie we will watch. I want to watch something like Into The Woods but I know my dad doesn’t really like it. These are the questions, ladies and gents. Stay tuned.
We didn’t watch a movie. I began getting really sleepy and we watched Modern Family. I began to feel some pretty awful side effects and had to take my night meds.
I’m an awful pill taker. I’ve mentioned this before. And tonight, I just lost it. I felt myself lose it. I began crying because I have to do this for six months. About 16 pills a day for hopefully no more than six months. I feel like such a baby. Children take these meds, probably better than I can. How am I going to do this? I feel myself complaining about the back pain from one of my chemo drugs and I just want to shut myself up.
My parents are so understanding, too. I am so lucky. I really am. My dad and I are watching SVU now. It is so weird how I can go from hysterically crying at our kitchen counter to smiling with my dad watching law and order. I’m trying to embrace everything I feel so I can move on to the next feeling. One of my favorite teachers taught me that.
And now I am making this public to people. I will continue to share my story as it goes on. I hope I go to sleep soon but this SVU episode has me brainwashed.
shitiamgoingthrough 