one flew over the red herring

This is my third attempt in three weeks at writing a new blog post – hopefully not another false start. The first post, which I started on my last day in the hospital, was to be entitled “One Flew Over the East River.”  It was to be a lengthy, humorous account of my week in a four person room on the oncology ward. Though I did bond with a couple of the ten plus roommates that came and went throughout the course of the week, there was one woman who was there for a good chunk of my stay who I’m pretty sure had tourette’s syndrome. I made the mistake of asking the nurses to ask her to turn down her TV one night (she was the only of the four of us who refused to use headphones). She subsequently directed her anger, not at me, but at my other roommate, whose medicine made her gassy. Her epic belches and loud, perpetual flatulence were all met with a string of expletives from behind curtain number four. By my last night in the hospital, I was shacked up with three women with varying levels of dementia. Yes, this is a very sad thing. But let’s just say my compassion was put to the test.

The second blog post I started was to be called ‘The Red Herring Strikes Again.” Upon release from the hospital, one of my IV sites was swollen, red, hot. That, coupled with lingering side effects from the treatment (chills, fever, nausea) landed me in urgent care, and subsequently on a course of two different antibiotics, just in case, which resulted in complete loss of appetite, constipation, and lethargy. Although I was fairly certain that the combination of Bactrum and Amoxicillin was the culprit, when you have a GI system full of tumors, any stomach issues make you think you are dying, imminently. There were a lot of tears that week.

The moment I finished up the antibiotics – which coincided with a visit from April, one of my best friends on the planet – my appetite returned, I resumed daily poops, and I sprung back to life. I spent the week feeling like a million dollars. Although we mostly sat around playing cribbage and having the kind of marathon conversations that make you feel both brilliant and understood, I did manage to have an entire day in NYC, topped off with a concert at Prospect Park (Bela Fleck – YASS!!) with a handful of people I love, where I didn’t feel tired or ill or sorry for myself.  It was like having a brief vacation from cancer. Which is why, when my chills, fevers, nausea returned with a vengeance the next day, I was gutted. The vacation just wasn’t long enough.

Fortunately, Tylenol kept my symptoms at bay enough not to have to go to the emergency room last night, though I did wake up hourly to take my temperature. I spent today getting two units of blood to amp me up for my next round of treatment, which starts on Monday. When I arrived at the cancer center today, I got hooked up to the blood and slept for the next six hours. Again, I had side effects. I was under the impression that the side effects from these IL2 drugs were going to be acute, meaning that they would happen only on days when I was treated. I see now that this may not be the case. The only consolation in feeling so shitty is the knowledge that fevers are often indicative that your body is working hard to fight disease.

My decision not to have any visitors during my last hospitalization was a good one  – though my mom, sister and a cousin were there for a chunk of it, and a few friends popped in when I spontaneously felt up for some company. But it allowed me to develop really close relationships with my nurses and the ability to tune the world out completely when I needed to. And so I’m going to go with the no visitors policy again for this round.  I’m hoping my fevers remain manageable tonight and tomorrow, partly so I can enjoy my last day of freedom but mostly so I don’t have to be admitted early… I’ll be REALLY pissed if I have to miss Game of Thrones.

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chapter….um… six? i think?

So remember , like, a month ago, when I wrote a blog entry about novelty? About how nothing about my cancer was really new anymore, so I had less fuel to write? Yeah, well, about a week later, I got my new. New tumors. New growth in my old tumors. New treatment decisions. New fears.  Fucking jinxes.

Here’s what is going down… On Monday, I will be staring on a new clinical trial that requires me to be hospitalized for two separate weeks this summer. The trial is called ALKS-4230, and it uses an updated form of IL-2 therapy. IL-2 (Interleukin 2) is a protein that activates the immune system. It basically tricks your immune system into thinking your body is in sepsis, so it goes into overdrive. Back in the stone age of cancer treatment (before 2011), IL-2 was one of the few alternatives to chemotherapy for melanoma patients. It had a very low response rate (I believe 7%) and was very toxic.

Apparently this updated version of IL-2 is less toxic; the reason I will be inpatient for the first two rounds of treatment is so that they can monitor me very closely and treat any side effects as they crop up. This is the first phase one trial I’ve been on… the drugs I was on in the past had already been proven for safety, and I was in the group on which they were testing for efficacy. The drugs I’m about to go on – and this is where it gets fun – have only been tested in animals thus far. Actually, that’s not true… I’m in the 4th human cohort. Each cohort is given a certain dose of the drug, and if people tolerate it, a new group is recruited and the dose is increased. So I’m pretty much a guinea pig, which I’m perfectly fine with for two reasons.

Reason one. I’ve exhausted most of my options. Sorry, I know it sounds bleak, but it’s the truth. I’ve done immunotherapy twice, two different targeted therapy combos, tumor bombs. They all worked for a brief period, until my cancer stopped responding. I guess maybe because I’m a smart girl, my cancer is smart, too.  We do have a back-up plan – another clinical trial that’s about to begin – in case this doesn’t work. But we’re not going to think about that now, because we going to focus our power of positivity on this IL-2 thing working.

This brings me to: Reason two. For every disease that’s ever been cured, someone has been the first one to receive the cure.  Why not me? Why not this drug? If we weren’t living during THE renaissance of cancer treatment, this would be an idealistic way to think. But because of the progress that’s being made every day, it’s just optimistic, and possibly realistic.  Also, even though there’s not “A CURE” for cancer, there are actually many cures for cancer. Every cancer is unique. A particular therapy acts as a cure for one person, a certain drug combination works for someone else. Maybe my cure already exists. Maybe we just haven’t landed on it yet.

Anywayyyyyyyy, that’s pretty much what I know right now. I got a port placed this week. It’s basically a permanent line placed in the vein in my neck, which is attached to a little plastic disc that they inserted under the skin on my chest. Most people opt for a port because they use it instead of having to find veins in your arm every time you get blood work or an infusion or a scan. I did not want one. I can’t explain why other than just finding it icky. That said, I know it will make next week easier, considering they have to take blood 5X per day for the study.

Last week, I bit the bullet and bought a new computer, as I am going to use the forced confinement to do some writing and editing… if I can. Which, I think, based on what I’ve heard from my oncology team (there’s no data but anecdotally patients are tolerating these drugs pretty well), I should be alert and able to do some creative damage from my hospital room. Speaking of which…

I have decided that I would prefer not to have ANY visitors during my first week of treatment. If you think that this may not apply to you because you are one of my nearest and dearest… sorry, but it does. I am hoping that those close to me will understand and respect this decision – I put a lot of thought into making it. I will post an update very soon, but for the next week, I’d just really like some privacy to deal with both the heavy emotions and physical adjustments of moving into this new chapter.

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epitaph for novelty

If you’ve been following my blog from the beginning, you’ve likely noticed that my posts have become less and less frequent. There is a very singular reason for this. When it comes to writing creative nonfiction, there are two types of experiences that ‘do it’ for me, that beg me to write: the big stories – the ones that I’ve fine tuned at wine-fueled dinner parties – and the brand new experiences. This is why, in my pre-cancer life, I really only blogged when I traveled to places that inspired that wide-eyed, childlike sense of awe. Whenever I’ve tried to write about the mundane day to day, self doubt and justifications have invariably found their way into my words. Who cares that you made yourself a perfect omelet and took Oscar to the dog park? Nobody wants to read this shit.

The truth of the matter is that having stage 4 cancer has lost much of its novelty. And this is why I’ve only been posting when my disease has taken a turn for the worse, or after a hospitalization, or when a treatment that seems to be working has offered me a newfound sense of hope. I didn’t even feel compelled to blog after my latest set of scans, because nothing really changed.  Sure, there were slight changes in the size of my tumors (two shrunk, two grew, which is considered ‘stable’ disease), but I had nothing new to say. This wasn’t a new experience for me. This is my world, now: treat, scan, find out I’m still not dying but I’m still not cured, rinse and repeat.

Part of the normalization of my life with late-stage cancer is that when people ask how I am, I automatically say, “I’m good” – it’s almost pavlovian. “I’m good” = happiness, relief. Anything other than “I’m good” = sadness, discomfort, fear. And who wants to evoke negative emotions in the people they love?  Also, when I say I’m feeling good, the line of questioning ends there and allows the exchange to take a natural, two-sided course. Responding with anything other than “I’m good” forces the conversation down a cancer-centric road, into a Jen-centric clearing. I’ve always been a bit of an attention whore, but attention garnered from, let’s say, playing the new song you’ve written and attention you receive from being sick beget two very different beasts. The former made me feel like a handsome cheetah racing across a sweeping landscape in a BBC documentary;  the latter makes me feel like an ill-fated puppy cowering on a patch of concrete in a late-night charity infomercial.

On the rare occasions that I do feel the need to discuss my disease with anyone other than my therapist, I find it difficult to communicate my thoughts and feelings properly. Because I’ve never been much of a spontaneous thinker, I wind up either being unceremonious or spewing out pre-packaged ideas. Basic, universal feelings have specific words assigned to them. The complicated network of feelings that come attached to a life-threatening illness do not. This is why my writing about cancer has been so heavily reliant on metaphors.

I once began a blog post with the sentence, “There are days when I forget that I have cancer.” This is no longer true. There are moments, sure. Sometimes even hours. But even the briefest allusion to any event that will take place more than three months in the future brings about a dark cloud. This is not to say that my life doesn’t continue to have great meaning. It does. I live each day as if I have a vast future ahead of me, and I still manage to find profound joy in my daily routine, in my relationships, and in my consumption of the world around me, but I do so with the pervasive knowledge that the odds are stacked against me living to a ripe old age. Last week, as I was reading the gorgeous cancer memoir “When Breath Becomes Air,” I came across a sentence that expresses this sentiment better than I am able to. Paul Kalanithi wrote, “The curse of cancer created a strange and strained existence, challenging me to be neither blind to, nor bound by, death’s approach.”

I know that some people very close to me will be inclined to see the morbidity in this quote, will hone in on the words “death’s approach.” And to those people,  I want to shine a light on the words “nor bound by.” I do not feel bound by death. I feel bound to life, which is why the threat of impending death is so very horrifying to me. My lament for the absence of novelty is tied to my personal writing – not to my whole person. I just want to be well enough to go out into the world and find newness that stirs my writing loins.  I do not wish for novelty in my disease, unless that means that some new breakthrough in treatment fashions a ray of light that can pierce the dark cloud. I await clear, blue skies with bated breath.

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red herrings and silver linings

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.

 

 

 

 

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the good

I’m writing from the balcony of a gorgeous beach house in St. Augustine, staring at an exquisite seascape. It’s 62 degrees. I have a strong cup of coffee.  The only sounds are the steady crash of waves and some buzzy creature that has gotten itself wedged into the window frame. If I could paint a picture of what my life would look like at 42, this, right here, wouldn’t be that far off. Except for the cancer. I wouldn’t have painted that in.

It’s been nine days since I started my new treatment. Since my last post I learned that I didn’t qualify for the Plan A clinical trial. Because I had been infused with ipilimumab (which has an extremely long half life) in December, there would be no way of knowing which drug was producing any results I may have had, meaning the data collected in the trial would have been inaccurate. So tumor bombs it is.

My oncology team were super awesome about creating a treatment schedule that allowed me to be on this trip, to watch two of my best friends from Busan tie the knot. I was incredibly anxious about side effects impeding my ability to enjoy my time here, or thwarting my travel plans altogether. The most common side effects of the Glembitumimab/Varlilimumab combo are extreme fatigue, rashes and hair loss. However, they are cumulative… meaning these side effects are more likely to come on after my next infusion. So far, I feel like a fucking million dollars. I mean, I’m tired, but a cancelled 7am direct 2 hour flight to Florida that turns into a 10:30am to Boston, 4 hour layover in Logan, 3 hour flight to Jacksonville and hour long drive to St. Augustine will result in tired.

The most significant change I have noticed in my body over the past week is that I no longer have stomach pains.  Up until my first Glemba/Varli infusion, I had been experiencing daily mild pain in my gut, which makes sense since that’s where all of the disease is. As hesitant as I have been about being ‘too’ optimistic, I am taking this as a good sign. I have to. I have been so, so careful about choosing the words to describe my outlook – cautious optimism, guarded pessimism – but no phrase can really sum up what it means to feel completely healthy while sitting on the knowledge that I have an illness that could kill me very quickly if treatments continue to fail.

I made a vow to myself that during this weekend, especially on the day of the wedding, I wouldn’t talk about my cancer. The spotlight belongs on the happy couple, the spotlight belongs on happy, period. But I haven’t been able to keep that vow. A bunch of the people here are people who know and love me, who know exactly what I’ve been going through… people who, in the not so distant past, were people I spent every day with, people who know my deepest self, people who I have not yet been able to have proper face to face conversations with about ‘the cancer.’

And then there are the people here to whom I am connected peripherally, who I have either met while they were passing through Korea (such as the groom’s parents) or who share several common friends on Facebook. The introductions go something like this:

“Hi, I’m so and so, and I know Miriam/Seth from high school/college.”

“Hi. I’m Jen. I know these guys from Korea. I was in a band with Seth.”

And then I see the 2+2 click.

“Oh. You’re that Jen. I’ve, uh, read some of your posts that Seth shared on Facebook”

And so, despite my pre-game self pep talks, many conversations have gone there. Most of them have started off by my new acquaintances giving me the once over and noting how very healthy I seem, then hesitantly offering something along the lines of, “So you’re good now?” And then I need to make a decision. Do I go the buzzkill route? “I mean, I have stage 4 melanoma, so…,” which would require a lengthy, sciency diatribe to explain the rapidly progressing state of cancer treatment and how this all pertains to my own prognosis.  Or, I can go with the simple answer. “Yeah, I’m good now.”

Because the truth is that right NOW, at THIS moment I am good. I thought that being the only person not drinking at a wedding would kind of suck. But the bright side of my forced sobriety is that it has afforded me the clarity to really take everything in –  the tranquility of this seaside cottage, the feeling of sunshine on skin that is no longer allergic to it, the comfort of pick-up-where-we-left off friendships, the firecracker spark of new friendships, laughter-filled trivia games, the love that is wrapped around me like a warm, soft blanket on a cold winter’s night.  I’m not good. I’m much, much more than good.

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bombs away!

So, my scans happened.

One of my tumors -the largest one- shrunk. The other four grew. This to say, I didn’t respond to the Ipi/Nivo this time. Now, before you go blubbering on the subway (Dana), know that I consider this to be good news. I hope I can convince y’all to do the same.

Had I responded to this round of immunotherapy, I would have continued on with the protocol – receiving infusions of just the single agent, Nivolumab, 75mg, every two weeks, indefinitely. Let me remind you that despite the amazing response I had two years ago, which afforded me an entire year without disease, I was still on the Nivo when all that new disease cropped up in my gut. So if, last Friday, I had gotten the news that I had been hoping for, I would have gone forth always waiting with bated breath for the next other shoe to drop.

Friday marked my first appointment back with Dr. Melissa Wilson, who has been blissing out on new mommyhood for the past three months. When she first came into the room (which I made her do twice, since my camera wasn’t rolling yet), we all exchanged warm hugs, catch-uppy stuff and baby photos. Then Melissa looked at Ariel and I and scrunched up her nose. I knew immediately what would follow.  As she gave us the rundown of the scans (progression of my existing cancer but no new disease, thank fuck), neither Ariel nor I so much as flinched. “What’s next?”

We learned that, since my scans three months ago (when the ‘what’s next?’ elicited a shoulder shrug and a ‘weelllllllll’ before listing some pretty unsavory options), two new clinical trials have opened up. The first trial combines Nivo (240mg) with another immunotherapy agent called Urelumab. From what I understand, the side effects would not be much different than the ones that I’ve experienced or have been at risk for on the Ipi+Nivo. The first cycle is eight weeks, at which time I’ll be scanned to measure the results. The second trial combines Varlilumab with a cytotoxic agent called Glembatumumab, which Melissa described as a’tumor grenade’ – the drug is activated in your system and literally blows up cancer cells.  Unfortunately, they also harm healthy cells, so the side effects would be along the lines of those associated with chemotherapy.

These are both phase one trials – both drug combinations have been proven for safety but not yet for efficacy. There’s, like, NO measurable data out there. None. The handful of patients currently on trial one are mostly responding… at least to the point where their disease is stable. I was told that someone on trial two, whose health and quality of life was severely compromised by his cancer, is functioning fairly normally after just one infusion of the tumor bomb drug. The doctor who is treating him called this the most dramatic response to any treatment she has ever seen.

I’m going with trial one… not just because I can’t pronounce the trial two drug names and would rather not lose my hair, but mostly because the Nivo/Urelumab is ONLY available to me RIGHT NOW. There’s only one slot left in the trial at NYU, and it’s only available to patients who have just failed certain immunotherapy combos. Like me. The second trial just just just opened, and I was assured that it will be an option a couple of months down the road, if need be.

So instead of getting 75mg of Nivo every two weeks, I’ll be getting 240mg of Nivo and another promising immunotherapy drug. Something new I learned this week is that the more immunotherapy drugs you get, the more adept your immune system becomes at killing cancer. T-Cells have memory, so the effects of immunotherapy are collective. Kathy, an NP on my oncology team, recently said to me, “Jen, we have patients who go through ten different courses of treatment and the eleventh one works, and then they’re healthy for years and years.”

I see this as kind of like a student going to all different math tutors, trying to learn a particular concept. Maybe the first teacher almost gets through, and the student successfully solves a few problems, but is still scratching his or her head. And then a few more tutors help to slightly improve the student’s understanding.  Then, just the right tutor walks in and presents the concept from just the right angle and the student has that lightbulb-over-the-head moment. I have been white-knuckle holding on to Kathy’s words – and to the fact that insanely rapid progress in Melanoma treatment means that maybe the tutor that can produce MY lightbulb moment is just finishing up grad school. Ok, I’m done nerding out.  The bottom line is that there is hope. There is a lot of fucking hopeful hope.

The past three months have been emotional hell – not so much because I was scared I was going to die as for the fact that I simply didn’t know how I should feel. I was trapped in a holding pattern.  I hadn’t the foggiest idea of what 2017 might look like, whether there were risky surgeries or antiquated treatments as hail mary’s on my horizon. I couldn’t make any tangible plans , couldn’t even buy plane tickets to Florida for the upcoming wedding of two of my closest friends. It felt like someone had pressed pause on my spirit. Now that I have a plan A aaaand a plan B, and the confidence that plans C,D,E, and F are already in the pipeline, I finally feel like I have some semblance of control over my world again. I feel like I finally have the energy to jump back on the positivity train.  I mean, yeah, I still have a bunch of tumors in my gut. But I ain’t gonna let those bitches stop me from smiling and striving. I’ve often talked about how cancer has waged war on my body. Well, now it’s time for me to wage war on cancer. And lucky me –  I’ve got tumor bombs in my pocket.

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Lights, Camera, Cancer

As published on Cure Today… but WITH the f-bombs…

One of the running jokes that has been born in the midst of this long, mostly unfunny battle that melanoma has waged on my body started at my weekly poker game. This particular poker night wasn’t so different from our regular game – a decadent meal, proper yenta banter, and 20 minute long hands with so many wild cards that everyone winds up with a royal flush so that we have to split the pot 6 ways – except there was a full camera crew and Oscar nominated director capturing our schtick on film. We went about our thing until Lucy cleared her throat… “Ok, everyone. It’s time to talk about Jen’s cancer.”

The conversation that ensued seesawed back and forth between hilarious and gut-wrenching. It was here that, for the first time, I got to hear the story of my diagnosis from the perspective of those who love me. Until that night, my family and friends had kept me largely sheltered from the thoughts and feelings they experienced when they learned that I was sick. So here I was, choking back tears as my aunts and their poker crew recounted exactly where they were, who they were with and what ran through their heads when they got THE phone call. How my godmother was instructed to go to my mother’s house so that I could Skype and deliver the news to them while they were together… how my mom crumpled as soon as I hung up… how the phone chain went down.

As for the aforementioned running joke: My friend and poker cohort, Cindy, began to talk about my blog, about how helpful it was for her in truly understanding both the logistics and the emotional duress I was under. Then she said, “Man, Jen. You’re a great writer. I wish you’d been blogging for years.”

I threw my hands up and shrugged. “Um… I have. It’s just that nobody read my blog until I got fkn cancer.”

We all laughed. But inside, I was also cringing a little. It was true. I had spent the previous decade traveling and living abroad, posting meticulously crafted travel blogs. And while some of my close people followed  my journeys through my words and photos, it wasn’t until I started my cancer blog that ALL of my people (as well as thousands of strangers) really sat up and started to pay attention.

The same kind of went with film. I had been writing and pitching screenplays for almost fifteen years with very few bites. And then I got cancer and decided that I wanted to make a documentary about my experience. A few phone calls and coffee meetings later, I had a development fund from a top-tier cable network, with talk about finishing the film with Sundance and Academy deadlines in mind.

When I requested permission to start filming within the hospital I am being treated at, their media department enthusiastically cooperated. Knowing that I was ok with discussing my cancer openly, they felt comfortable reaching out to me for other Media opportunities.  I was the subject of two major news stories, several magazine articles and a patient outreach video for a health insurance company. I often joked that I was being pimped out as the poster child for melanoma treatment.

Through my own film project, I got to attend the Society for Melanoma Research’s annual symposium and interview the top melanoma researchers in the world. This was unprecedented; the SMR had never allowed filming at one of their meetings before. I arranged to meet with Dr. Arlene Sharpe, the woman who discovered the PD-1 pathway, which led to the drug Nivolumab… one of the drugs that saved my life. When we met, I cried. She teared up, as well; I was living, breathing affirmation of her life’s work.  

I then got to meet Dr. Jim Allison, the man who, several decades ago, was sitting in his lab in Berkely and thought, ‘Hmmmm…. instead of trying to create drugs that kill cancer, maybe we should go back to basic biology and try to create drugs that allow the immune system to kill cancer.’ Because our film team had already wrapped when he arrived, we would be unable to conduct an oncamera interview with him. Lo and behold, he would be traveling to New York the following week, and I suggested that instead of a ‘talking head’ interview, perhaps he could join me during my infusion. And so it came to pass that the ‘godfather of immunotherapy’ sat knee to knee with me in my tiny infusion cubicle, watching as the drugs that were the product of his genius coursed through my veins – something that, as a lab scientist (as opposed to practicing oncologist) he had never witnessed.

It’s been over a year since we started filming. When I first proposed the film, I was doing so in the wake of my amazing response to immunotherapy, which after just three months, rendered me essentially ‘cancer free.’  We were making a film about this renaissance in cancer treatment that was happening in real time. I was able to document infusions and oncology appointments where I learned that I continued to be N.E.D. (no evidence of disease).

The ‘problem’ was that all of my story was backstory. I was already ‘well.’ And as exciting as it was for my health to be in tact, the fact that there was no footage of me ‘sick’ meant that there was no story arc, no suspense. So we started talking about getting some newly diagnosed patients on camera, people who were to undergo the same ‘miracle’ drug combo I was on, so we could capture the side effects, the emotional roller coaster and most importantly, moments where people who were facing the grim prognosis of metastatic melanoma finding out that, like me, the immunotherapy had annihilated their disease.

We used the last of our development money to hire an editor, so that we could stitch together enough footage to help us secure further funding.  And then we got our camera crew on board for a ‘deferred pay’ shoot of my final infusion slash one year scan results appointment. And so it was that, with cameras rolling, I found out that my cancer was back in full action. As completely fucking devastating as this news was, the filmmaker in me was like, ‘Ok. Here is the drama. Here is the story arc.

The production team we are working with in LA sent me a camera and tripod and, for the past nine months, I’ve been self-filming my treatment, my side effects, my doctor appointments, interviews with friends and family, and these weird, often very sad, late night confessionals. We’ve had proper teams on board to film interviews with me and things like scan results… where my own emotional investment compromises my ability to ‘direct’ the scene. Our film is no longer primarily about this new advent in cancer treatment… Now, it is an intimate portrait of a young(ish) woman who is battling melanoma during the FIRST TIME IN HISTORY when melanoma might not be a death sentence.

The past few months have been a total shitshow for me, as far as the cancer is concerned. After failing several targeted therapy treatments, I am now back on that ‘miracle’ combo, and hoping like hell that I respond in a similar way that I did the first time. I continue to live my diagnosis very publicly (obviously, as you are reading this post), and we are still in the process of securing funding for our film. That said, there are days, weeks, when I hide away from the world, refrain from pressing record. Because pain – especially emotional pain – often calls for privacy. Not only because I don’t people to see it, but more because sometimes I need NOT to intellectualize it, creativize it… the act of documenting it allows me to distance myself from the pain, and sometimes, I just need to feel it.

Sometimes, when I watch back the footage of this past year, I cringe at the prospect of audiences watching a 50 foot close up of my tear-contorted face, snot dripping from my nose. More often, I view it with pride, as it enables me to see what a fucking fighter I have been through this nightmare. But the feeling I most frequently experience when I watch these scenes from my life with melanoma is a sense of purpose. I understand the profound value in telling my story. My hope is that telling my story will dispel the myth that melanoma is ‘just skin cancer’, that it will propel parents to be more diligent about putting sunscreen on their children, that it might shed some light or offer some hope to the so many others out there doing battle with the beast. Any of these things are worth the sacrifice of my own vanity.

As for my ego, that’s another story. One of my greatest fears is that, if I lose this fight, I will disappear. Being faced with death has augmented my desire to make my mark. And so all of these words I write and all of the scenes that I film serve this other, bigger purpose… to preserve my persona, my humanity, and my voice for posterity.

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