hi. i’m back. sorry i fell off for a few weeks. i blog when i feel the need. when the well of cancer related information, observations, milestones, frustrations fill up to the tipping point… i don’t mean as in, like, a cracking point where i can’t handle it – i mean fill up to memory capacity, where if i don’t blog now some important details are going to start to trickle out and get lost completely.
also, the last time i blogged coincides with my first therapy session, not to mention that in this space of time i’ve had visits with three of my closest female friends on the planet. and so i’ve had ample opportunity to spew the things i’ve needed to, leaving me with less of a burning need to share it. therapy rocks. my therapist rocks. she sits on the cancer board of a local hospital. smart as a whip. super laid back and easy to talk to. i can cry my eyes out in sessions and it feels really fucking great to have a space where it feels safe to be vulnerable. another healthcare professional to add to my list of heroes. ironically, her initials are j.c.
*note – if you landed at this blog as the result of a google search, because you or someone you love is fighting the beast, i can’t stress enough what a gift to yourself counseling is right now. we need it. trust me. i have a solid and vast support system that i am so grateful for and take good advantage of, but it’s not the same. i can’t strip it down, even with my nearest and dearest, in the same way as i do in the presence of a clinician who knows what they’re doing.
another reason i haven’t posted in a while is that not that much has changed on the big-c front. not until now, anyway. i’ve had two more infusions. they went pretty much the same as the first two. all the other stuff that’s happened has just been my life. and i’ve kind of had this internal dialogue about whether or not i should be just blogging about my day to day. but i’ve never done that – not unless i’m traveling or have some kind of epiphany. the day to day stuff – that’s mine. i don’t want to share all of it.
worth mentioning are the fantastic dinner i had with my family for my sister and brother’s birthdays; the trip i’ve booked to drive through england and france with nuala, one of my favorite humans, to present a thirteen minute film in germany; the night of breaking bread with ariel’s warm group of friends from six different countries (a night that more resembled a dinner in busan than i’ve had since i’ve been home); my weekend long mission with jaimee, my long time partner in crime, to watch every single academy nominated film before watching the oscars together; my eleven hour amtrack journey to canada to grab april in montreal and head to ottawa to try our damndest to take even a shred of the sting out of our nat’s sudden loss of her hero of a father; having both my first job interview and first date on the same day, both really positive experiences that gave me faith in my ability to assimilate back into life in new york.
(can one of my gatrillion teacher friends confirm that i used semicolons appropriately in previous paragraph, please.)
one great reason i haven’t blogged is that i’ve been writing like a mofo. that statement might seem really contradictory, but what i mean is that i’ve been too busy working on the projects that will hopefully shape my career going forward. if ever i’ve had a prolific time, where i’ve lived and breathed my screenplays, it’s been the past few weeks. i may or may not have mentioned this in a previous blog, but i got back to new york with this idea of this cancer bullshit being a good excuse for a writing sabbatical.
i had two great projects i’ve been developing over the past year ready to move from the development stage into the scripting stage lined up to work on. i decided, one day, to revisit a script i wrote fifteen years ago about three childhood best friends in their early 40s who reunite when one learns that she has terminal cancer. go figure. i had realized that the cancer element in that script was so, so generic, and so i thought i’d spend a day or two just tweaking the medical scenes to reflect a battle with cancer more accurately.
turns out, there were other things that needed some tweaking structurally and dramatically – not to mention the fact that, having written the script in 2000, when smart phones didn’t exist… myspace didn’t even exitst yet… i had my protagonist reaching out to people by snail mail. a week and a half of writing day in day out allowed me to take a script that was meh, at best, and turn it into a really rich story with characters i am proud to have birthed. a script i feel really confident about shopping.
in the old script, miriam, my protagonist, goes to the doctor, with whom she has this stiff, unfamiliar relationship. the type of cancer she has is never specified and the conversation goes something like this:
Doc: I’m sorry, this round of radiation did nothing.
Miriam: It’s still growing?
Doc: Yes. There maaaaay be one more thing we can try.
Miriam: But nothing that can stop it.
Miriam: How long I got, doc?
Doc: Six months. Maybe a year.
and that’s it. she just accepts it. doesn’t make any kind of treatment plan. she just spends the rest of the movie basically hanging out with her friends and family waiting to get sick and die.
What. Fucking. Bullshit.
now, here’s the thing. when i wrote that fifteen years ago… that may very well have been what a ‘you’ve got terminal cancer’ appointment looked like. there really weren’t the options there are today. now, miriam has my exact diagnosis and gets put on infusions of my exact drugs. she and her doc have been on this cancer journey together long enough to have code words and inside jokes. let’s just say that for dramatic reasons, miriam doesn’t have as good of a response to the drugs as i seem to be having. you’ll have to wait for the movie for the rest…
yet another excuse, and probably the card i’d most likely play if someone (other than the voice in my head) were to call me out for being so lax in maintaining this blog, is that some unpleasant side effects have come up in the past few weeks. namely, fatigue. i have always believed that i understood the definition of that word. fatigue: n. the condition of being extremely tired. right? doesn’t even begin to cover it. by 5pm each day it feels like a million o’clock. like someone put a fishbowl over my head, poured lead in my veins and hung weights on my eyelids. it’s a lot like being stoned without the joy. in fact, when people see me they tell me it looks like i just smoked ten joints. the simplest way to put the medical explanation behind it, is that the fatigue is related to my body’s overcompensation to my initial hyperthyroid reaction to the drugs. i’m now on hypothyroid meds to balance me out. i really, really hope these meds make me feel more normal. it’s not fun and if it gets any worse, i’m afraid it could interfere with my mobility. fingers crossed, kids.
on a brighter note – two paragraphs ago, you might have noted, ended with the phrase ‘as good of a response to the drugs as i seem to be having.‘ yes. i intended to imply that the drugs are working. yet another reason i’ve held back from blogging. i can’t provide measurable results just yet. just to reiterate, i discovered these two new metastases because the one on my chest was a hard lump just below the surface of my skin. it was distinct and large enough (size of a bb pellet) to warrant rescheduling my scans a month before i was due for them. now, after four infusions, i am almost unable to find the tumor by touch. part of me wants to shout it from a mountain (especially since doc w confirmed that the shrinkage is not just in my head). but… although the likelihood is that the other tumor, the one in my bronchiole, is responding in the same way (i.e. shrinking), there are some cases where one tumor responds differently than the other.
that said, i’ll be able to confirm one way or another pretty soon. i’ve just completed my ‘double drug’ portion of the course – i’ve had four infusions of the ipi + nivo every three weeks. now, going forward, i’ll continue with the nivo infusions every two weeks for the foreseeable future – potentially for two years. before my next infusion, i’ll be going in for my first set of scans since beginning treatment. i’m hopeful but guarded. i promise promise promise that i will post those results as soon as i’ve received them and had a chance to process them.
that’s all i got, for now.