as i sit down to write this, i’m feeling an anxiety/ambivalence only second to the night i activated my ‘you caring’ account and posted my diagnosis on facebook. the reasons i am guarded now are so, so different from the reasons i felt hestiant then. on that day in december, when i posted that first ‘i have cancer’ facebook status, i made a decision to live my life in the public eye. those who know me well are probably snickering right about now, thinking ‘um, jen… you’ve always kinda been a public eye slut’. but this was different – this was a willing and wholehearted commitment to sharing the intimate details of the scariest and most emotional time in my life. this was not a performance.
as most of you know, my fourth infusion in march concluded the ‘double drug’ portion of the study, meaning i’m done with the ipilimumab, and will only be getting nivolumab from here on out. the other thing that fourth treatment session signified was that it was time to get some scans and, for the first time, be able to measure the progress. as i mentioned in my last post, the small tumor on chest had shrunk based on touch, and so there was a lot of talk that the drugs seemed to be working.
going into scan day (which my doc scheduled 3 days before infusion number five so that i could get my results face to face as quickly as possible), so many people wished me luck and love and fingers crossed – and a few close people, when i simply nodded and smiled, reminded me to keep my thoughts positive and my hopes up. for the most part i was positive. i think, even from the beginning of all of this, i have been trying my damned best to live my life as if i had a vast future ahead of me, trying to carve out a career, rekindle old relationships and form new ones.
but of course there was part of me that was stuck on the reality of my situation. despite my inclination towards hippiedom, i’m actually a pretty mathematical person. the statistics, while more in my favor than ever before, aren’t, like, even close to favorable. and as encouraging as the chest tumor shrinkage and hopefulness of my nyu team was, i still had to emotionally prepare myself for the possibility of bad news. this past december, i learned what it felt like to convince yourself of the best and then find yourself faced with the worst. it’s fkn sucked.
scan day was actually an awesome day. in fact, i’ve had such great cancer buddies that all of my treatment days have been filled with laughter and good lunches. what an effective use of time and space in nyc, too… it’s like having a free living room with comfy furniture in midtown manhattan to host a catch up every few weeks. scan day doubled as ‘spend quality time with hilary (my college roomie) day’. i could (and likely will, in my other blog) write a whole, separate post about our time together. one important detail that will play into the story again in a few paragraphs is that we pretty much ate our way though nyc. go big or go home.
i went to sleep that night just feeling kind of numb about the scan thing. it was out of my control. worrying wasn’t going to help (a page i’ve taken from my stepdad’s outlook on life). and then, at 3am, cold sweats, chest pains. stomachache. short breath. part of me knew it was a panic attack. i know what they feel like now. but in my head, in said state of panic, these symptoms were something far more malevolent. ‘maybe this fatigue really isn’t a thyroid thing – i feel spacey because i’m not getting enough oxygen because the tumor on my lung has actually doubled in size…’
the meltdown lasted for about an hour and a half, and resulted in an email to doctor wilson at 5 am requesting a phone call the following day. i made sure i mentioned the food orgy, the glass (ok, two) of wine i had with dinner and the continued fishbowl of fatigue i’ve been living in since the beginning of march. i woke up the next morning to a response saying that my physical symptoms sounded like indigestion, and i could expect a phone call in the morning. not long after, my phone rang and there was doctor wilson’s increasingly familiar voice.
as soon as we established that i was feeling much better now, she assured me that my tumor, my melanoma, was definitely not the cause of my symptoms… she saw my scans and i was in that 15% statistic. i have had a ‘complete response’ to the treatment. she had realllllllly wanted to tell me in person, she had wanted to see my face, my tears of joy, when she told me the news. but she didn’t want me to spend another 48 hours in meltdown mode.and maybe she would have been disappointed, anyway, as there were no immediate tears of joy.
i hung up and then dialed my sis, ariel, who more than made up for my own lack of relief-sobbing, and the best i could do was make an off-color joke about the fact that it was april fools day. i spent the next few days telling a handful of people, but largely keeping the news to myself to digest and process my own feelings about it as well as to fully understand it.
first, i needed to sit down with my team and find out – what the hell does complete response even mean? on friday, i showed up at the clinic on 34th street with chocolate, flowers, a box of donuts and a card. i felt like a dorky teenage boy going on a date. after an- as always – both hilarious and informative meeting with my sis, melissa and clair(e?), i believe i have a clear understanding of what ‘complete response’ means.
the numbers side of it, for my more sciency friends (ahem-april-frankie-ahem) is that my breast tumor – which if i’m not mistaken was 1.1cm, is gone, completely, or at least microscopic. my lung tumor went from 3.4cm total size to .8, which is the size of a normal lymph node. now, here’s the thing that’s tricky. the word ‘remission’ generally isn’t used to explain cancer status until enough time has passed without recurrence – and the word is almost never used when talking about melanoma.
since i used a metaphor to frame my own main question, i’ll use the same metaphor to hopefully explain what i’m dealing with going forward. the question was …
“am i out of the woods?”
and the answer is this. no. i’m not out of the woods. sadly, i will always, always live in this forest. however, i am out of the part of the woods with the dense scary trees and gnarly undergrowth. now imagine my tumors as fierce little ninjas. my drugs are my protectors, lets call the immunotherapy (ipi) a hunter and imagine that the pD-1 inhibitor (nivo) is my bear spirit animal. and let’s, just for fun, call melissa and my cancer team at nyu, my white-coated warriors.
my homeys took out the two ninjas who were hunting me, and there appear not to be any others hiding in the brush. but it doesn’t mean others aren’t just super well hidden, or that new invaders won’t find their way into my neck of the woods.
as of now, my ninja-hunter has vacated the forest but has booby-trapped the shit out of it, and my spirit bear will be guarding me fiercely for the duration of the bristol myers squibb study (almost two years). my warriors are vigilantly on the lookout. and now, i can breathe more easily and take in the newly blossoming trees around me, knowing that if i have to be in this forest, at least the path i’m on is quite a pretty one.
the first sentence of this blog speaks of anxiety and ambivalence. while i’ve just gotten the best friggin’ news possible – and maaaaaaaaan, i couldn’t do enough cartwheels to prove how lucky stars thankful i am – there is one addendum, one burning little question, that was fodder for another, even more restless, sleep on friday night… ‘what now?’
it is with a heavy heart that i also report that a dear friend of my family – who did her own battle with the beast and who fought it with every ounce of her spirit and who was one of my most vocal ‘fuck cancer’ cheerleaders – passed on last week. R’L’L – the world is a lot less bright without your light in it.