things that go bump in the night

this past thursday night, i hosted the weekly poker game i play in. i had spent all day preparing a gorgeous meal… it was well received, and it was an all around good night despite the fact that by the time we wrapped i was down a few bucks. so it goes. as the penultimate hand was dealt, i was already feeling a little lethargic.

my thyroid recently did a flip flop again, and for the last month or two i’ve been riding a consistent yet tolerable wave of the usual suspects…perpetual  low grade headaches, digestive (poop) issues, low morale and lack of appetite.  despite the fact that lack of appetite comes hitched to much welcomed weight loss (because i get full after just a few bites), it’s been my least favorite of my ‘special effects.’ those who know me know that food falls into my top three passions. i have spent most of my adult life exploring the aesthetics of flavor, have dedicated a good chunk of my career to writing restaurant profiles,  and have, for my whole life, absolutely delighted in the art of eating.

a lot of people, when they hear the phrase, ‘lack of appetite’, interpret is as lack of hunger. this is not the case; at least it hasn’t been for me. i often feel hungry… even starving sometimes. it’s just that there’s not a single thing i can think to eat that is actually appealing. i can have a perfect eggs benedict  or reuben sandwich in front of me (arguably my two favorite dishes) and i can take a bite and acknowledge that it is fucking delicious, but there’s this underlying repulsion. getting the fork to my mouth feels like a chore. chewing and swallowing feels like a job. for someone who has such a beautiful, healthy relationship with food, this experience is heartbreaking.

so back to poker. it’s the end of the night. i’m looking at my shitty cards and yawning and i cradle my face in my hands and i feel something. there is a lump on my right cheekbone. i run my finger back and forth across my cheek and the panic sets in. this lump is exactly the same size and consistency as the one i found on my chest in november of 2014. you know, the one that turned out to be malignant melanoma. that  little pea sized thing that kicked off this whole hellish hayride. i folded my cards. then i lost it.

fortunately, i was surrounded by some of the closest women in my life. i sobbed into my godmother’s chest, while she rubbed my head and just kept saying ‘oh my god. oh my god. oh my god,’ like a chant. the other women who were still there kind of hung back and just let me know they were there for whatever i needed. one of the things i love about this group of women is that they have handled my cancer SO well.  they have never tried to sugar coat it, or tell me ‘everything is going to be fine.’ they have cried in front of me, let me see how deeply this affects them, too. they have let me be as morbid or irreverent or as aloof as i have needed to be at times.  and they have still treated me as ‘jen’, giving me shit when i forget to ante, making fun of me for the spaz that i am.

i immediately texted melissa, my oncologist, even though it was 11pm. she and i have officially crossed the friend threshold, and i knew that speaking with her, even if it would be first thing the next morning, was the only thing that would keep me from going insane. she texted back… ‘can i call you now?’ my wish is that every cancer patient would have a doctor that is as wholly dedicated to their overall well-being as melissa wilson has been to mine.

melissa was out of town at a conference, due back monday. my options were to see kathy, the superhero of a nurse practitioner in my oncology office, the following day or i could wait to see melissa on monday. either way, i’d head up to pathology for a biopsy with immediate results.

i left poker feeling a little more sorted, and as i got into my car, i had a light bulb over the head moment. i mentioned before that i am a spaz. more like a total fucking klutz. i’m so, so clumsy that i’ve been asked if i trip over my own feet and spill things on purpose for laughs. i realized that i had been cooking all day. for me, preparing a meal almost always involves a cut, burn or bruise. i remembered that i had, in fact, had an ouch moment. trouble was, i couldn’t remember whether that ‘ouch’ had been elicited by a wooden spoon to the cheek. it was a distinct possibility, and i grabbed onto it.

when i got home, i iced my cheek and then the next morning i called kathy to share my theory. she recommended arnica cream and ice, and if the lump hadn’t dissipated by monday, i would come in to see melissa and have a biopsy. as the weekend wore on, and the lump persisted, the tiny shred of hope that this was a contusion faded. i made an appointment for monday… today.

melissa felt my lump and acknowledged both its existence and its potential significance. before going upstairs for my biopsy, i asked her THE question –  what if it IS a metastasis? her answer was positive and straightforward. if it was, in fact, melanoma, i would continue on the nivolumab for another few infusions and then have a head to toe scan. if anything showed up, i would revert back to infusions of the ipilimumab/nivolumab combo, which i responded to so well the first time around.

i’ve written a bunch of times about why being on these brand new drugs is so tricky… though they have figured out that these drugs have the ability to knock out cancer in a way that has never existed before, they still haven’t quite figured out how long they need to be administered for to truly prevent recurrence. and there is also still the question of why some patients’ results are sustainable and some develop a resistance to the effects of the drugs. meaning, it can come back. at any time. this is the reason i have been so hesitant to use the words ‘cancer free.’

the biopsy itself was a little bit comical. i’ve been making a film about my journey with these new cancer drugs, and any new developments need to be documented. we shot a lot of amazing footage with the funding we received from a development deal with a wonderful media entity, and have been waiting to hear whether that entity will be backing the film going forward.  The director in me knew that I needed to get this biopsy on camera, even if it was to be an iPhone video. if it turned out to be something that would redefine my cancer trajectory, it would be a critical part of the story.

and so when the ridiculously hot dr. hernandez walked into the exam room on the tenth floor, i explained to him that i wanted to somehow get a close up of the needle going into my face.  when i further explained that i was setting out to tell my story on film to help give hope to newly diagnosed melanoma patients, he made every effort to accommodate the filming process… allowed me to get shots of the sonogram (on which we the lesion was visible, but, in his words, ‘not impressive’). then, he excused himself to grab his colleague, dr. levine, who would perform the procedure while he filmed it for me.

dr. levine apologized as i whimpered. a needle in the face without any anesthesia isn’t super fun. she finished and dr. hernandez handed me back my phone. the video didn’t work. ugggh. fortunately for my film, but unfortunately for my face, i needed two more needles to gather the necessary cells. the third one hurt the most, and when it was done, i was as relieved it was over as i was that i had gotten great footage of ‘the subject’ crying out in pain. sick. but necessary.

like, two minutes later, dr. levine came back in and told me that the stains weren’t grabbing onto the cells (or something like that), meaning there were no melanoma markers. they thought it was something called nodular fasciitis, a benign growth that is possibly the result of trauma or chromosomal abnormality and is often mistaken for a sarcoma (tumor) because of its rapid growth and structure.  bottom line is that it’s nothing dangerous. there is still the teeniest chance that it is melanoma… they are doing a more advanced set of stains just to be sure because, as dr. levine put it, ‘melanoma can be tricky… it doesn’t always show its face clearly.’

feeling much more at ease, i stopped by koreatown on my way to penn station and treated myself to a bowl of kimchi sundubu jjigae, and then hopped on a train. when i got home, i heated up the last leftover piece of chocolate bourbon pecan pie that i made for poker night. when the microwave (over the stove)  beeped, i pulled it open and the door swung out, hitting me right in the cheek. right in that spot. and i’ll take a shot in the dark here and say that maybe, just maybe, that very same thing happened a few days ago. trauma. causing nodular fasciitis.

here’s the thing. having been through what i’ve been through… having a little mole on my knee and eventually a little lump on my chest turn into what could have been a death sentence, every little weird bodily thing for the rest of my life will be this scary. every little lump and bump will warrant an emergency doctor’s appointment. maybe i should try to be a little more careful opening microwave doors and such, so i can have a few less lumps and bumps to freak out about.