I have a lot to say. A LOT. Ideally, I would have been publishing small, digestible blog posts with updates every few days. I managed to write a chunk of this blog post, but alas, my limited mobility, a constant stream of nurses, doctors and visitors and my little self-administered pain meds kept me from finishing. So now I’m faced with the task of finally letting y’all know what has transpired since my ‘Surprise Surgery – Sunday Funday” Facebook status sent my people into a panicked phone chain.
I’m going to start with the Cliff’s Notes version of the last two weeks for two reasons. One, because this blog is going to be a whopper, and some people aint got time fo’ dat. Secondly, it’s going to be graphic and, at points, absolutely fucking disgusting. And so I’ll give you the opportunity to opt out of things that I wish I could opt to have removed from my own memory.
The nutshell: Had scans. Next day started puking. Thought I accidentally OD’d on Frankincense oil. Next day, got scan results – they were good, responding to treatment. Got my next infusion of clinical trial drugs. Continued puking for three more days. Got scared. Went to ER. Found out bowel was obstructed. Transferred to NYU. Had piece of my small intestine removed. Stayed in hospital for 9 days. I’m out now. I’m recovering well.
Now for the deeper version, which I started writing on about day 4 of my hospital stay:
There is a spattering of rain across the large picture window, and despite my grand view of the East River, it looks ugly outside – cold and grey. Makes me happy to be in my cozy room at NYU Langone. To use the word happy may seem a stretch for someone who is hospital bound after unexpected major surgery, but after the amount of pain I’ve endured in the past week, happy might even be too weak a word, by comparison.
Last week was to be a big one. The clinical trial I am on runs on shorter cycles than the other treatments I’ve been on, meaning that they scan every six week to measure progress. My CT was scheduled for Tuesday, March 21st, and the results would be delivered at my oncology appointment on Tuesday , 23rd, when – if all was going well – I would also receive my third infusion of Glemba+Varli. I had tutoring sessions scheduled for Wednesday night, and a meeting with my screenwriting partner, Steve, organized for Friday – we have been making incredible headway on our first collaborative script and I was psyched to sink our teeth deep into Act II.
Let me pre-game this next little tidbit by saying that despite my reputation for being a bit of a hippie, I’ve never really bought into the whole essential oils game. The only thing I know about aromatherapy is that it smells nice, and I like when yoga teachers rub lavender on my temples when I am in shavasana. My best friend swears by essential oils… she has done all the training and research necessary to fully understand how to properly incorporate them into your daily regimen, and has successfully used them to keep her family cold (and worse) free for years. When she learned that pure Frankincense has demonstrated benefits for cancer patients, she purchased a (quite expensive) bottle as a gift for me. Though I was told it was safe to ingest the oil, I had been using it mostly topically since I received it. A bit behind each ear and a teeeeeny dot under my tongue. Until last Wednesday.
Maybe it was because it was the day before scan results day and I was in my full scanxiety splendor, or maybe it was because I’m just a fucking idiot, but I decided to shake a few drops of the (insanely potent) oil onto my toothbrush. By the time I arrived at work, I knew something was not right in my body. I told my boss so, and she moved my second session so that I’d only be teaching two hours. Breeze. As I started to sink into a lesson on developing sound arguments for the ACT Essay with my students, my stomach started to do funny things. I set up a timer, gave him an essay prompt, and then went to shit my brains out. By my fifth trip to the bathroom, things had started coming out the other end. My boss eventually knocked on the door to check on me. She is fully aware of my heath situation and has made any and every accommodation to work around the cancerbeast. As gracefully as I could, I gathered my belongings and headed home.
Hours and hours and hours of violently vomiting. My mom running up and down the stairs to empty the wastebaskets I was filling (I had to sit on the toilet while puking into a trashcan so I wouldn’t pee myself), holding my hair, rubbing my back. Endless Google searches that confirmed that ingesting too much Frankincense oil can, in fact , result in nausea, vomiting and stomach pain. Calls to doctor… “Stay hydrated – keep us posted.” Gatorade. Water. Pedialite. Flailing in pain in my bed until my body finally gave in and fell asleep at 5am, only to be awoken by alarm at 7am to get ready for my big day at NYU.
Still queasy, I managed to accompany Ariel and Melissa in as big a smile and woo-hoo as I could muster as we learned that I AM responding to these trial drugs. One of my tumors disappeared and the rest shrunk. Not dramatically, but definitely smaller. The largest of my tumors went from just over 8cm to 6.8. Progress. I then got berated for the whole Frankincense oil thing. Kathy was like, “Um, Jen, you usually call us when you want to take Tylenol and you’ve had anaphylaxis from Monostat… how did you not think to check and make sure this was ok??” We decided that it was worth doing my infusion despite my nausea. I spent what is usually a peaceful day reading and writing doubled over a trash can.
Thursday night through Saturday night is a blur. All I did was vomit… half a tall trash can full of green bile every 3-4 hours. By Saturday night at about 1am, I started to get scared. My chest started to constrict. Panic attack or dehydration-induced heart failure? I crawled into Ariel’s room and we decided that it was time for the ER. “Jen, even if you had drank a bottle of bleach it would be out of your system by now…. AND it would be coming out BOTH ends.” True dat. ER it was.
Turns out, having stage 4 cancer and chest pains gets you a bed in an ER pretty fucking quickly. Ariel and I were a little like ‘ummmmmmmmmmm’ when the doctor said he wanted to do scans. I mean, I had literally had scans four days before. He was concerned that I had a bowel obstruction since I hadn’t pooped since Wednesday. We agreed to Xrays and then reluctantly to scans and by early the next morning it was confirmed that I did, in fact have a bowel obstruction – the tumor that was in my small intestine (that was already there, that we already knew about) – has caused my small intestine to start telescoping onto itself and stop working, meaning nothing that was going in could get out – which is why my body had been pushing all my attempts at hydration and nourishment out in the form of puke.
The second they sent a surgical consult into my room, I was on the horn with NYU finding a way to be transferred to the place that has my entire medical history on record – not to mention it’s, like, the best hospital on the planet in my book. Within hours, I was strapped onto a gurney, loaded into an ambulance (first time ever and we had all the lights and sirens – so fun!), and brought to NYU Langone’s ER. My parents and Ariel met me there and the doctors confirmed that I would need surgery – like, now. The plan was to take out the 6ish inch section of my small intestine around where the tumor was.
“Wait, so you’re taking out one of my tumors?”
“That’s the plan,” said Rachel, the super cool surgical resident who had been prepping me.
And then came the part of the prep that, to date, has been one of the worst things I have ever experienced. I had to have an NG Tube inserted immediately, wide awake and with no anesthesia. This is a tube that is inserted in through your nose and down your throat into your stomach (which, at my request and with shaking hands, Ariel got on film). The other end of the tube is attached to a suction, the purpose being that since the fluids in my body couldn’t get out my blocked end, they are sucked out through my nose so they wouldn’t aspirate into my lungs. So, basically, I would be shitting out of my nose. I assumed this tube would stay in just for while I was under general anesthesia during the surgey. Not the case – but I’ll get to that.
The surgery went well, but my parents and sister were given a certain time to meet me in the recovery room and the timing was off just enough that they happened to walk in just when I was brought out and being moved from the table to a gurney and, according to them, I was screaming at the top of my lungs. I don’t remember much other than that moment, which felt like I was being stabbed with a thousand knives. That night is a blur of gentle nurse’s hands and pain med induced delirium and the sound of one of my post-op roomate’s constant complaints in a voice that (as my cousin Jason pointed out and almost made me split my stitches open with laughter) sounded very much like ‘Buffalo Bill’ in Silence of The Lambs. I swear, if she had asked for lotion I probably would’ve just keeled over.
I was awoken the next morning by a pretty surgical resident telling me that they were removing the catheter and if I wanted to pee, I had to get out of bed and walk to the bathroom. I could barely lift my head. When the physical therapist came to ask me if I wanted to try to go for a stroll i told her to get the fuck out of my room (which she later forgave me for). Because the NG tube was still in and pumping green black and red goo into a canister next to my bed, I was not allowed anything – not even a sip of water – not even an ice chip. I was told that the only way to get the tube out was to pass gas. And the only way to get my newly snipped, still sleeping small intestine working again was to get up and move around.
By the end of that day, I had managed a few laps around the ward. Melissa, my oncologist, came to visit me. We joked about how it wasn’t Frankincense poisoning, after all. She said, “You know, Jen… I’m gonna call you the Red Herring from now on.” If y’all remember, the last time I was hospitalized almost a year ago, it was in the wake of a finger that got infected after a manicure. (See blog post ‘Hell and Back…’ here). For those of you who don’t know, ‘red herring’ is a device used in film and literature – when there is a whodunnit and the story teller wants to throw you off to think that someone or something is the culprit so the end isn’t too predictable. My manicure wasn’t the culprit – it was the cancer drugs… the frankincense oil wasn’t the culprit – it was the tumor in my small intestine – in both cases, there was an obvious answer, I just happened to coincidentally have some other weird factor that also made sense. Anyhooo….
When they deemed me ‘out of the woods’ two days later, I was moved into a new room, a bed by windows that looked out over the East River and a roommate named Alexa. As I laid in my new bed feeling sorry for myself because of the NG tube and studying the NYU menu to plan out what my first meals would be, I unwittingly eavesdropped on Alexa’s dad’s heart to heart with the nurse. I learned that Lexie was twenty-three and had been suffering from horrible GI disease since she was fifteen. She had just started culinary school when the shit (literally) hit the fan again. This window into who the girl on the other side of the curtain did two things. It made me stop feeling so sorry for myself, and it made me pretty confident that, once she woke up from her nap, we were going to become friends.
During the next few days, Lexie and I quickly grew close to both each other and to the steady influx of amazing nurses that cared for us. Since I started being treated at NYU almost two and a half years ago, I have theorized that every single person hired at NYU is brought into a special room and injected with sunshine, rainbows and just the right amount of irreverence. I continued to do laps, and everyone was rooting for me to do the one thing that would get that fucking tube out of my nose, that would finally allow me a sip of water and my first bite of food in two weeks: a fart. My phone and Facebook messenger was flooded by poop and fart emojis. I decided that whoever was in my room at the time my ass finally erupted was going to win a prize… a prize I would only disclose once it happened. And though I rolled with the jokes, every time I had a runny nose and had to blow it, the snot was causing the tape holding the tube in my nose to lose its adhesive and the tube would slip and I’d be stuck holding it with shaky hands that would cause me to sneeze, which was brutally painful to my abdomen and wound up having about three full on hysterically crying meltdowns per day.
After five torturous days, doing two miles a day in circles around my ward, the amount of liquid coming out through my NG tube started to slow down (which meant it was starting to move down through my system) and my stomach started to make a familiar rumble. And on March 31st, at almost 4am, I woke up because I had to pee. I pressed the call button for my nurse to help me to the bathroom and as I lie there on my side waiting: PFFFT! It happened. And nobody was there to hear it. My nurse and I silently cheered as she helped me to the bathroom. I think she was as excited for me as she was for herself, as she could finally stop changing the tape on my snot-filled face.
At six am, the surgical team came to me on rounds and one of them gladly held the video camera as the bane of my existence was finally removed. As I was handed a cup, I realized that I will never, for the rest of my life, take a sip of water for granted. It. Was. SO. Good. When Lexie woke up, I got to tell her that, even though she was sleeping, she was the only person in the room when I farted, meaning she won the prize… a credit in my documentary as ‘Producer of Unicorn Farts.’ She was ecstatic and the irony of her being the one to earn that title was not lost on her one bit.
I spent two days on a first a clear and then full liquid diet. Because patients on liquid diets are so limited, they send trays with jello, three different kinds of juices, water bottles, pudding, ice cream, teas. Obviously, I had to go slow, and by the second day, I had accumulated a window sill full of all of the things on the tray I couldn’t/didn’t want to eat. I learned that once it’s in your room, if you don’t consume it, it gets thrown away. So Ariel and I did operation nutrition drop – I refrigerated all of the perishables until she visited that night, and she delivered a giant bag of sustenance to a homeless person on her way out that night.
Lexie’s siblings and mom were trying to keep her spirits up after she learned that she has Chron’s disease and would be having an ileostomy on Tuesday. Her big warm group of family and friends were a perfect match for my visitors, to the point where Saturday night was like a party in a dorm room. Lexie’s mom was on the phone with a friend, who asked if she was in a bar. As I mentioned, Lexie was a culinary student, and she and I both oohed and ahhhed over the perfectly cooked salmon and mashed potatoes. I was thoroughly enjoying my first few meals while she was savoring her last few before surgery.
Leaving the hospital yesterday was bittersweet. I have never felt as well cared for by medical staff, nor have I ever felt as ‘let it all hang out’ with a stranger as I did with Alexa, who is listed in my phone contacts as ‘Lexie Unicorn Farts’. Despite the twenty years between us, and regardless of the tremendous differences between our diagnoses, we are both young women living with chronic illnesses. Hers may not be as life threatening, but it is much more compromising to her quality of life. At one point she told me she felt bad complaining to me because I have stage 4 cancer and I told her I felt equally bad complaining to her because I’ve had twenty years of adulthood to finish college, reach career goals, travel around the world… whereas she has been constrained by her illness since she was a sophomore in high school. Diseases are not comparable – and there was no point focusing on whose disease was worse… what she and I needed from each other was simply the love and support of another human being who could empathize with having a shitty fucking disease.
So I’m out. I am feeling good. I am recovering. I am eating well and pooping. My staples come out next week. As far as I know, I will still continue this clinical trial as planned. Although this complication came up suddenly, it was not necessarily ‘unexpected’. I had a tumor in my small intestine – this was always one of the many potential complications. And so I’ll leave you to chew on this. The tumor in my small intestine was the one that was the ‘trickiest’ because, worst case scenario, it could have blocked my bowels. Surgery wasn’t a viable option before because it was too invasive if it wasn’t absolutely necessary. And guess what? That worst case scenario happened. And now the scariest of my tumors is GONE. And if that’s not the shiniest of silver fucking linings, I don’t know what is.