Day 1 of Radiation
Monday, July 11th, 2016
It’s 3:12 AM.
I can’t sleep.
I put my hands on my neck and fear there is cancer there, despite being towards the end of treatment.
I’m done with the chemo, that obstacle is over. But I couldn’t feel more unhappy.
I’m crying.
These days, it seems I can’t stop crying.
I hate how different my life is. I hate it so much.
And I hate how even when people have the best intentions, everything they say makes it worse.
“It’s only temporary,” they remind me. Well, it’s not pleasant to temporarily hate myself.
“You’re still beautiful,” they insist. No, I’m not. I’m not. I want so badly to see myself that way, but I don’t.
“You’re so close, it’s almost over,” they say. No, it is not. It is not over, and it won’t be over until my hair is back and I look like myself again and I feel like myself again.
This is so frustrating. I see old pictures of me and I just want to look like that again. I want to be that girl. She is so unrecognizable to me.
I’m scared people are going to stop caring about me once the actual treatment part is over. Sometimes, more often than I’d like to admit, I feel like the love I receive, both from friends and family, is temporary. (Temporary is my least favorite word nowadays.) That once the doctors declare my cells are no longer cancerous, I’ll stop getting messages of encouragement, or I’ll no longer be able to justify my outbursts of tears. That I’ll be expected to be back to my normal, happy self. And I just can’t see myself being back to that way anytime soon.
Cancer is so fucking rude. And I’m sorry for cursing, but sometimes I feel it is necessary. Cancer takes everything from you. Your independence, your health, months sometimes years of your life, your confidence, and that’s only some of it.
I am isolating myself from my friends. I don’t think I’m doing it on purpose, really. At least, I hope I’m not. It’s hard to tell. I see messages pop up on my screen and I just can’t answer. I never know what to say. When people ask me how I’m doing, I usually say “good, how are you?” And that couldn’t be farther from true. I put on a happy face when people visit me, and sometimes I fake it so well I begin to believe it myself. But then they leave and I’m left with my thoughts. And nothing is scarier.
I should try to go to sleep. I’m just scared. I’m not sure of what. I am scared.
Side note, today is four months that I have been dating David. Tomorrow is four months since that first day in the ER.
Goodnight, for now.
Today has been an amazing day so far.
Day 3 of Radiation
Wednesday, July 13th, 2016
That day, Monday, was amazing for several reasons.
So the first thing I did was wake up around 9:00, which was oh so lovely considering I went to sleep around 4:00 AM. I went to the hospital to get my finger pricked, to ensure I was no longer neutropenic.
I went straight home after that and fell back asleep. My mom woke me up to go back to the hospital, because I had to pee in a cup so they could test my urine. (What fun!!!) The first thing I do when I wake up, as many of us do, is look at my phone. And on my phone was a message from David, saying he finally got the summer job he wanted!!!!! I was so beyond happy for him. He was stressing out all summer up until then about finding work, and he finally did! So that is reason one for it being an amazing day.
Literally (maybe not literally but it feels literal so go with it) ten minutes later, my mom told me the doctors called with my scan results.
Okay, so pause.
Let me update you real quick. I finished my fifth and last cycle of chemo July 10, my last actual day of chemo was June 27, my first day of the fifth and last cycle of chemo was June 20, David surprised me in New York June 23 (more on that later), and my final scans were July 8th.
Final scans are when you go into the hospital for a PET scan and two CT scans. (Please seek earlier posts for definitions on these scans.) (If you are too lazy to do so, like I would be, google is a dope help. However, quite honestly, I am still fairly confused on the definitions of each.) SO on July 8th, I had these scans to see how my body reacted to the five cycles of chemo. If there was no evidence of disease (NED) then I would be done with chemo and onto radiation. The doctors were pretty confident that I would have no evidence of disease, because I reacted so well with my post cycle two scans. But still, I was nervous. You can’t eat all day until after the scans. My scans, lucky me, began at 4:00 and weren’t over until 6:00. And the same way on Yom Kippur, (Jewish holiday in which you abstain from food and drink the entire day) I was hungrier than usual because I wasn’t allowed to eat. We always want what we can’t have, ammiright ladies? 😉
Once they call your name in the waiting room, they bring you to a separate waiting room to prepare you for the scans. I got injected with radioactive chemicals and I had to drink a concoction that consisted of oral IV contrast and raspberry crystal light (the only option). It tastes like watered down Kool-Aid. I also eavesdropped on the people in the waiting room next to me. I think my dad was, too. Then they bring you into the scan room, which is always FREEZING, (not that I mind, I love being in cold rooms) and they have you lie down on the motorized platform. They layer warm blankets on you (similar to the hot washcloths in a nail salon, but not wet) and tell you to stay completely still. Then they injected me with IV contrast (in addition to the oral IV contrast) which makes the cancer light up in the imaging, and I did not move throughout the entire duration of the scans. However, I did hum. I don’t know why. It calms me down. My dad later told me I shouldn’t have done that. Oh well.
Back to Monday.
So, post good news of David getting a job, my mom told me the doctors called with my scan results.
No evidence of cancer!!
My brother and my mom were so excited.
I texted David and let him know. I told my friends. I wrote it in all caps to truly capture what good news this was.
But here’s the thing.
I didn’t feel excited. Of course, I was happy and grateful I did not have cancer. But the fact of the matter is, I did. And now I am hairless, unconfident, and unhappy. I smiled for my family and smiled for the world, but I felt weird. I got texts and messages congratulating me, with words of kindness and admiration. I couldn’t respond. I still haven’t responded. I feel like a phony. I didn’t do anything. I don’t feel brave. I feel scared, and alone. And how can you tell the people you love that you’re not excited about not having cancer? It’s not like I was excited about having cancer. I just felt the damage was done.
Post hospital, I played Bananagrams with my family. If you haven’t played Bananagrams, let me tell you all about it. It is my new favorite game; I’m a Bananagraddict. It is virtually Scrabble, but each person plays at the same time, and it is speed that wins: not points. That was actually a terrible explanation, but the point is, it is an amazing, addicting game.
Then I Facetimed with David for a while, (it was our four month after all) and then the entire fam hopped in the car to go to radiation.
I’ll have radiation 14 times in total. Monday-Friday, at 9:30 PM, for three weeks. (Weekends off, woo!) I go to a special radiation place, called Pro Cure Proton Therapy Center, that uses proton radiation. That is a more advanced radiation therapy that is more targeted to the tumor and less damaging to surrounding tissue in my body. The closest radiation site that uses proton radiation is located in New Jersey. (Booooooooooo!) (Kidding.) (Sort of.)
I had been to the radiation site once before, and oh boy what an event that was. Mid-June: It was a long day signing forms and talking to radiation therapists and doctors. But the most interesting part (in my opinion) was towards the end of the day. I had to get a body mold that I would lay in during the actual radiation. So I laid in some covered goo that would eventually hold me into place in weeks to come.
Prior to me laying in said covered goo, the doctor informed me that I would have to get permanent tattoos (that would look like freckles) so that the radiation nozzle would know where to go and where not to go. So while I laid in my mold, the woman whose job it was to tat me up promised me it wouldn’t hurt. She said, “I recently read that if you cough as the needle goes in, you barely even feel it.” Wonderful, I thought. So, she counted to three, and I coughed.
She was fucking wrong.
Here are the things that were wrong with her tactic. A) It did fucking hurt. B) She fucking stuck me with the needle AFTER I COUGHED. SO EVEN IF THAT COUGHING TRICK WORKED, I WOULDN’T KNOW NOW, WOULD I? And I know what you’re thinking: Casey, you said tattoos, as in plural, so couldn’t you have known if the coughing trick worked the second, third or even fourth time around? Well, silly, sure! If the woman had stuck in the needle simultaneous to my cough ANY OF THOSE TIMES. Needles to say, I no longer cough on the count of three to decrease chances of pain. On the bright side, I’m a bad ass with some dope freckle-like ink.
Anyway, back to the ride out to Jersey. I texted David, played Trivia Crack (basically Trivial Pursuit but better. I’m obsessed.) and Candy Crush (if you don’t know what that is you can ask literally any mother with a smart phone.) until we got there. We waited for a while, in the cold lobby, and I felt nerves bubble up inside me. Everyone I had spoken to, doctors and survivors alike, told me radiation did not hurt at all. It just made you tired, if anything. But, alas, the nerves had arrived. A woman came over and introduced herself as Danielle. She said to pick one family member to come with me. Scott was the chosen one. #Blessed. She accompanied my father and me through the glass door, past the nurses behind computers, through a hallway and to the changing room. Danielle handed me a blue bag with a fancy Pro Cure robe inside of it, and an ID. (My ID has a picture of me that my parents photo bombed. Very symbolic of the type of family we are.) She explained to me that I would have to remove all clothing from the waist up, put on a hospital gown (that she then handed to me) and then my rad, new robe over it. Then, she told me, I would go across the hall to wait for a radiation therapist to escort me to the treatment room.
I followed these instructions and waited with Scott in the room across the hall. A woman named Geneva brought us to my treatment room, Treatment Room 4. It is quite the facility. The best way I can describe it is a wall that looks eerily like the time machine in Austin Powers with a motorized table in the middle. Geneva introduced me to the other radiation therapist, Jackie. I shyly said hello (I become rather shy with strangers sometimes.) and waited for father dearest to make his exit before de-robing myself.
I climbed onto the table that had my mold in it (with the help of Geneva, Jackie and a stepping stool. Fml.) and laid there as they removed my hospital gown to expose the part of my chest and neck that need the radiation. Jackie asked me what Pandora station I wanted, and I requested Stevie Wonder. No regrets on that choice, dawg.
The actual radiation wasn’t painful at all. If anything, it was a bit dizzying. I’m genuinely not sure what moves around me, but the table moves and I think the machine moves and it feels like the entire room moves. I listened to the music and it was over before I knew it.
I’m actually in the lobby right now waiting to be called in to go change. I feel like a radiation pro. It’s very busy today.
Now that I’ve caught you up on the medical stuff, let me fill you in on my life. If you are solely interested in the medical side of things, I’d stop reading now. But, hey, rude.
I’ll begin with David’s visit to New York.
It was June 23rd, the fourth day of my cycle. I was sitting in the IV room, waiting for my shot that boosts my white blood cell count, in a very bad mood. My mom was beside me, and my dad was downstairs getting a Coke Zero, a common thing for him to do. Next thing I know, my dad comes in the IV room, and trailing him is the one, the only, David Frew. I felt my jaw hit the floor and I hugged that boy until I thought I may kill him.
And okay, here is the weird thing: I had a feeling he would surprise me that day.
My parents and David will deny there is any truth to this, BUT THERE IS. Let me tell you why. (I like that I say let me as though you have a choice in the matter. Hahahahahaha. Silly.)
The night before, David told me he was going to sleep early. And David NEVER goes to sleep early. That kid is up until, like, 2 AM nightly. (Morningly? Daily?) This was suspicious. Then, on the way to the hospital that morning at 7 something, I saw him comment on an instagram picture. WHY WOULD HE BE UP THAT EARLY? He will 9/10 times sleep in until noon. And in the car ride over to the hospital, I just had a feeling. I did. Believe me or don’t, I did.
Anyway, to say I was happy to see him would be an understatement. He told me he would be staying for twelve days. It was exactly what I needed after a rough three days of chemo.
And in no particular order, here are some of the things David and I did during his stay in New York.
We began the series Entourage. Well, I have seen every episode of Entourage at least twice. David had never seen it. So when I say “we” I really mean him, but I was there for it.
We saw the show, An Act of God, starring Sean Hayes. It was really funny. Especially because there was some audience participation, and of course, David was one of the participants. It is very David-esque for that to happen.
My family introduced him to the show, Big Brother. It’s a reality show that is virtually Survivor but in a house. If you watch, let me know who you’re rooting for. I’m torn but I think I want Mama De to win. Or James. There’s this one character, Bronte, who both David and I could not handle. Her voice is a special kind of irritating, the kind where you do not understand how that sound can be made from a fellow human being. I loved when she came on the screen, though, because David would always make a face. It made me laugh.
We went on a double date with Jessica (one of the five fucks) and her boyfriend, Alex. We went out to dinner. It was such a good time. It was the first time I met Alex, who is just a silly amount taller than me. Hugging him is an ordeal. David took this night as an opportunity to tell embarrassing stories about me. I won’t get into which ones, but my face was turning red continuously throughout the night, which he took great pleasure in. *Cue eye rolling.*
Speaking of his hobby of embarrassing me, one day when we were in the waiting room of the hospital, he loudly started talking about “my diarrhea” and not to be embarrassed about it. WHICH I DID NOT HAVE. I repeat: No diarrhea here. That boy is a hassle and a half who has too much pleasure in humiliating me. Which happens too easily.
David and I are also big fans of the game Odds Are. Which is essentially a game where you dare someone to do something, i.e: lick a stranger, and the person who was dared picks a number 1-100. The higher the number the less the person wants to do the dare. The number they choose is used as a range. So if I dared David to lick a stranger’s ear, and he said 30, I would then count down from three and we would say a number 1-30 after I say one. If we say the same number, then David has to do the dare. If he doesn’t, he can do a rebuttal, and we count down again. But this time, if we say the same number, I have to do it. David and I play Odds Are lots of times in public. Sometimes, he comes up with these absurd dares that have me laughing so hard my belly hurts. He is one of the funniest people I know. There was this one time, where we were walking home from dinner, and I really had to pee. He dared me to say to the next passing person, “I have to pee. You have to pee. Let’s make it happen.” And I don’t know why, but I thought that was the funniest thing in the entire world. I was laughing about that for days after.
Not to get all sappy on y’all here, but what is really great about dating David is that it is really dating my best friend. I can be 100% myself around him, without fearing he’s judging me at all. We can be sitting doing nothing or talking through hours of the night and I’m just happy he’s around. I really do think it’s fate that he came into my life when he did. He makes this experience a whole lot less sucky. He stepped up when a lot of guys would have ran away. I really feel like the luckiest girl in the world because of him, cancer and all.
My friend Lexi donated her hair to Locks of Love (sidenote: I thought it was spelled Lox of Love for so long. Now I picture a bunch of lox.) and asked me to accompany her when she did it. I was so honored that she wanted me there. She knew David was in town, so she even said to bring him. I was tearing up at one point, a mixture of happy tears and sad tears, because the last time I was at the hair salon was when I cut my hair super short. Lexi, if you are reading this, I am so proud to call you my friend.
There was one night in particular that I spent with David that I will never forget. We were sitting and laughing; he was passionately talking about super heroes and I was listening and watching his sheepish grin as he let me in on his nerdier side. There was a moment of silence, and I began crying. It was out of nowhere. The tears just fell. I was so embarrassed; we were just having such a good time, and I had to go ruin it. But David didn’t look annoyed. He held my hand as I cried in silence. It wasn’t an awkward, what-do-I-do-here silence. He was just letting me feel how I felt. We went on like that for what felt like forever. I kept saying sorry, and he kindly shut that down. No need for apologies, he said, that’s my job. He brought me in and I cried with my chin resting on his shoulder. It felt humiliating, but at the same time, so liberating. He was seeing a side of me I didn’t want him to see, and he was still sitting by my side. He didn’t make uncomfortable jokes to cheer me up. He didn’t try to say all the right things. He let me get it out. And eventually I opened up to him about everything that was going on in my head. And he shared with me too. It all poured out. Still, he stayed. He makes it easy to love him.
On the fourth of July, David’s last day in New York, we had “Date Day.” A day for just us two. We began with a late breakfast/brunch at EJs Luncheonette. If you haven’t been, I recommend it. They have huge ass pancakes though. Those portions are ridiculous. Way too much pancake for me. Delicious, but excessive. Then, we came back home to watch some Entourage. We were already in the midst of Season Three. After that, we went to a movie theater that has reclining seats, (how cool is that?) and saw Central Intelligence with The Rock and Kevin Hart. I had already seen it, but it was funnier the second time around. Then, we had a picnic in Central Park. That part may have been my favorite. We sat there just talking, playing Would You Rather, Odds Are…it was wonderful. Post picnic, we went to a restaurant called, “The Black Tap.” They’re famous for their absurdly cool milkshakes. It was amazing spending those twelve days with David. He made my last cycle fly by, and kept me smiling the whole way through.
David left on the fifth, early in the morning.
That night, I went to a Mets game with one of my best friends, Robbie. It was exactly what I needed to put me in a good mood post David’s departure. Robbie has been one of my best friends since freshman year of high school. We get along well because of our similar senses of humor. We do these weird bits that I wish I could put into words but I honestly don’t think I can. They’d also seem obscene on paper, and I’m not ready to acknowledge how weird I am quite yet.
The night was so fun and full of laughter. (And learning about baseball. #Sports.) We got interviewed by some guy for some paper, (we weren’t quoted) talked about random things and made lots of jokes. There was one moment on the subway on the way to the game, though, that stuck in my mind.
He asked me a question about radiation. Before I could answer, he said, “This will be the last talk of cancer for the night.”
I don’t know if he was saying that for my sake, or if he didn’t want to hear about it. I would assume the former. But, the entire night, I was so self conscious whenever I talked about cancer, or anything cancer related.
I don’t want to be that girl who is always talking about cancer. I don’t want to annoy people, or make them uncomfortable. Even when David was here, I felt myself filtering my cancer talk. The truth is, cancer is the biggest thing in my life right now. And it probably will be for a while. It’s a huge part of who I am now. Cancer isn’t who I am, but it definitely is shaping the person I am becoming. I can’t help but talk about it. It is around me 24/7. Even though I don’t have cancer in my body, it just takes one look in the mirror to remind me of it. Or one cab ride through Central Park to remind me of the trips to the hospital. I don’t want that to be my only topic of conversation. But it is going to be relevant to me for a long time, if not forever.
Other things that have happened during my time of not blogging: Had some dope ass visitors, Neil Patrick Harris called me, learned to sleep in my own room without anyone else there, started Shameless (already on Season Five. IT IS SO GOOD.) and became up to date on The Bachelorette. (Hit me up to discuss Jojo’s men.)
In real time, I’m on the way home from radiation. They moved my 9:00 time to 10:30, due to technical difficulties and what not, so it has been quite the night. My dad did one of those live Facebook videos to pass the time. If only y’all could see my eye rolling from here.
I’m going to try to blog more often. I feel much better after I do.
Over and out, homies.
shitiamgoingthrough 