special effects

i know, i know. it’s been two weeks.  actually, i’ve barely even turned on my computer in the last two weeks, whereas in my ‘old life’ i was glued to my keyboard for, like, 80% of the time i was home. and for about 70% of that 80% i was writing. i am going to need to keep myself in check about falling into the quicksand called on demand.

i sat down to write this last night, but it somehow felt wrong to write for an hour or two about my own ups and downs on the day that my grandma died. rhoda, my mother’s mother, was diagnosed with oat cell lung cancer just about two weeks ago. she deteriorated rapidly. she passed away yesterday. there is so much more to say about this, and much more shall be said between our family over the course of the next few days.

another thing that happened just about two weeks ago was my first infusion. my mom joined me for the day, which started with a blood workup and exam with doc dubya, a woman i feel more and more confident having put my life in her hands with each meeting. we were joined by yet another awesome new face, caroline, one of the nurses managing the study (whose names all start with c… which i’m sure must stir up a few irreverent cancer jokes in the hallways).

the infusion floor is not at all what i expected it it to look like. i imagined a large, open roundish room with spaced out lounge chairs all facing the middle of the room. i thought, like, i’d make some cancer buddies. maybe even a hottie or two. it’s really weird – in the past year or two, i’ve begun to think that i’d specifically seek to meet someone with children. after the cancer thing became a lot more serious last year, i kind of came to terms with the fact that i might not be able to bear (bare?) children and maybe even diminish my eligibility for adopting. when i got this most recent diagnosis, one of the things that was (is) hard to cope with emotionally is the idea of never dating again. the notion that unless i am definitely getting better, is it even fair of me to date? lately, i’ve been starting to think that meeting a dude who has or had cancer would take the whole ‘explaining my sich’ thing out of the equation. i cannot imagine spending even this year dateless.

anyway, back to infusions, which are given in private stalls with a huge recliners, chairs, a table, total privacy, total comfort, total efficiency (and i say that despite the fact that someone had written my birth date wrong on  some paper and i had to wait fo-ev-a.) the infusion itself was nothing. i had a needle in my arm all day. my mom and i ordered bare burger (love this new addition to nyc). i heard some fairly interesting conversations coming from the stalls beside mine. and that was it. that was thursday, the 7th.

a sore throat and a cold popped in that sunday and stayed for a few days, which both me and the nyu staff wrote off as a cold… and perhaps it was, at first. a few days later, just when i felt better, i coughed and it felt like someone karate chopped me in the neck. then, I woke up in the middle of the night sweating, short of breath, a mild headache. i was sure that i had a fever but i didn’t to wake my parents up because i was pretty sure they would have driven me straight to the emergency room.

next day, i went to see a local guy, someone my family has used as a general care physician and who i have seen several times myself through the years. he’s a super competent guy who in many ways is very personable, but i could have done without the ‘nice to meet you.’ c’mon, i’m memorable!! He told me that I probably had thyroiditis (a word i don’t think i had ever heard before), called my doc at nyu to touch base while i was in the room (which kind of redeemed him from the not remembering me thing), and prescribed aspirin.

now, i was told that if i were to have any side effects (which i have slipped and called ‘special effects’ so many times that i’ve adopted it into my cancer repertoire), they probably wouldn’t materialize until at least 3 weeks. although—side effects can turn up at any point in the therapy, even after the infusions conclude. thyroid inflammation was one of the more common ones that we had reviewed in my pre-study sessions. and i’ve never had a thryoid problem before, ever, so…

just as my neck was feeling better, i awoke with a very unfamiliar kind of headache, in the front of my head behind my eyes. i did a mental inventory of the special effects that might manifest. oh, yeah, pituitary gland inflammation, causing headaches. that day, while i was awaiting response to my panicked phone call to the answering service for the on call doctor, i curled up and whimpered in my bed – i have never heard sounds like that come out of myself, and i never knew that a headache could be so profoundly painful.

i wound up being given a green light for tylenol, which totally and quickly rescued me from headache hell.  I used the tylenol to manage the headaches as they came for the next day or so and then they mostly stopped. the day of my appointment, i woke up earlier than necessary because i needed the toilet. after three or four more liquid poops (sorry, dana) i set off for the city, praying that i wouldn’t get a bout on the long island railroad and have to use the train bathroom. ew!

so, turns out doc w. had gone to a conference about my drug combo over the weekend. she had known before and told me that adding the nivo quickened the immune response to the ipi… but four or five days after the infusion just seemed SO soon. keep in mind, this combo is so, so new and there isn’t a ton of data yet. in fact, i’m data. i signed  something (which being admitted to the study was not contingent on) saying that i allow myself to be data. are you kidding? of course i don’t care if my medical journey is used to help doctors learn about melanoma. perhaps i’ll be part of the data that gives future melanoma patients hope and a better prognosis because this combo kicked the shit out of my cancer.

but, yeah, we are all pretty confident that these are all side effects from the drugs. it was like one after another after another. good thing i didn’t have them all at the same time. that would have SUCKED. basically, doctors have figured out ways to manage the side effects (which btw are all associated with the ipi, the immunotherapy drug) in a step-up kind of process, which means they start with over the counters – if those don’t work, prescription drugs – then, they’ll try mild steroids and finally, stronger steroids.

going into my appointment, i was really worried about the possibility of getting pulled off the study because the side effects had the potential to harm me too much. after a thorough blood work-up, exam and long conversation with doctor wilson and caroline, i have a much clearer understanding of what could happen going forward.

one. my symptoms are manageable with drugs and stuff and i continue on as planned.

two. my symptoms continue, and i get held back from my next infusion, with the plan to get my 3rd and 4th infusions of both drugs (as i’ve explained before, the study entailst four infusions of the ipi+nivo then just the nivo for the rest of the year).

or, three. my side effects persist and/or get worse and i am pulled from the study. in which case i will switch over to just the nivo (the pd-1 inhibitor that has had all those bright and cheery outcomes). my doc joked that if i was pulled off the study it was because killing me would defeat the purpose of trying to keep me alive (paraphrased, doc was much more tactful).

hopefully, my special effects will just continue to respond to over the counter meds and disappear after a few days as they have thus far. i was prescribed immodium for the most recent symptom and i haven’t pooped since yesterday morning. i’m not happy about this. i am a big fan of my ‘regularity.’ (sorry again, dana).

i think i’m out of words now. i promise (mostly myself) not to let another two weeks go by between posts. if you happen to know any hot fortysomething dudes with kids and/or cancer, hook a sister up.  (kind of sort of kidding)

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7 Responses to special effects

  1. liza levin says:

    good morning jen……so sorry about your granny…..there was a reason that you were here now….prob to be with your mom during all this turmoil.i KNEW tylenol would be the simple…modest fix for you!…sounds like you are doing well…..it was wonderful meeting you and i am so glad to be reading your work…you NEED to write…..to get those thoughts out…….i think the infusions are making your randy! if you know what i mean……..i pray for you daily on my yoga mat…..hugs…the other ronnie

    Like

  2. Sandi says:

    Dana’s mom has the same phobia.
    Thanks for the update. Told my oncologist friend about your melanoma and treatment plan and he says that’s a very very good plan. (He’s a smart, well respected guy – up on all the latest data so I was glad to hear that)
    Take care.❤️

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  3. Cindy DuJany says:

    I love your blogs. so real. feel better! I love you

    Like

  4. 현경 says:

    Hi Jen!
    Hyun-kyoung…
    I read your story even if I don’t understand all of it…
    I’m thinking you all the time and Ellie and Robin miss you…..take care~

    Like

  5. lizperrella says:

    Hi Jen,
    Thanks for your post. I’m new to wordpress and metastatic melanoma, so I appreciate your sich in a personal way. First, I’m very sorry about your gramma, what a sad thing to happen.
    My onc is suggesting a clinical trial for me as well – High Dose Interferon Alpha 2B, to be exact. I’m meeting with them next week to see what the ins and outs of that are. But if you could suggest any informative sites about clinical trials, I would be most grateful. Thank you, and continued blessings for your journey.
    Liz

    Like

  6. Lori Schneider says:

    Jen sending you tons of love!!! Keep fighting!

    Like

  7. Rita says:

    Praying for you Jen. Love you so much!

    Like

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