time is so funny. i was reading back my last blog post, just to see where i left off. it was seventeen days ago, yet it might well have been seventeen weeks ago – so much shit has gone down since then.
“side effects: oh, there’s a giant list that varying percentages of patients experience. high fevers are the potential doozy. on that list are also warts and hair loss. not super psyched about the idea of those. i got off pretty light with the immunotherapy side effects, so…. (not gonna say it. at 41, i still believe in jinxes).”
yeah. fucking jinxes. they’ll get you every time.
saturday, april 2nd, i started my new drugs and my whole world changed. like, immediately. despite knowing that there were four huge, blood-oozing bad boys in my GI tract, i felt like a goddamn superhero. it was like, just knowing the cause all of those icky stomach and appetite issues made them go away. i was eating (as my dad would have put it) like i had two assholes, going to tons of yoga classes, developing rapports with all of my new students. then, on friday, april 8th, i got a manicure. (cue the old cinema suspense music – dun-Dun-DUNNNN…)
within a day, the cuticle on my right pointer finger was swollen and red and by sunday it got hurty. it was time to call melissa. when you get cancer, you don’t realize that things like a slightly swollen finger will be reasons you will make an emergency phone call to your oncologist on a sunday. before, i wouln’t have even flinched at something like this. but when you are managing a life-threatening disease, even the smallest infection can have tremendous implications or consequences.
anyhoo, i started immediately on augmenten, which i wasn’t thrilled about since my body+antibiotics=immediate yeast infection, always. i doubled down on the probiotics i was already taking and shoveled a bunch of yogurt down. as the week wore on, my finger started to look like something you’d find on the syfy channel, twice the size of its counterpart and filled with bright green pus. i headed in for my oncology appointment on friday (15th) and after one look, melissa was like, ‘yeah, we need to lance that.’
the rest of the appointment was an absolute riot. dr. wilson and kathy jokingly bickered about who was gonna do the honors and melissa won, because “she’s the doctor…” although it barely hurt at all, and despite the fact that i fully and completely trust melissa wilson with my life, i will probably not be inviting her to wield any scalpels my way anytime soon. we discussed my meds, my labs, how i felt and i asked the question of the hour…”is it possible the meds are already working?” to which she replied with a quote from the all-knowing bringer of wisdoms, the magic eight ball – “all signs point to yes.”
now here’s where we get to the good shit. and by good shit, i mean really really bad shit. by the time my train delivered me home, i had the beginnings of a fever. i let melissa know, and she instructed me to hold off on the cancer drugs for now. i took some tylenol, went to dinner and a movie with my mom. more fever that night, and again the next day. i opted to go teach my two session anyway – tylenol seemed to be keeping the fever at bay, and i brought along my thermometer to monitor myself, as melissa said that if and when i hit 101.5, it was time to go to the emergency room. lo and behold, by the time my session ended at 3pm, my fever had creeped up to 101.
i called home to warn my mom in advance that we’d have to go to the local ER. by the time i arrived home 15 minutes later, starting to feel really ill, i opened the front door to find my mom holding up her hand, which was literally projectile bleeding. in the chaos of her getting ready to take me, she tried to get oscar inside and he bit her… bad. my godmother came to take the two of us to BOTH check into the ER. as the shocked and confused intake nurse took each of our info, i joked that my mom always managed to find a way to upstage me. always the bride’s maid…
my mom gets sorted. i get admitted, and what follows is four days of pure fucking hell. the first night was the worst. after the first round of chills so severe that even under seven blankets i was shaking to the tune of epilepsy followed by a fever so fierce that it felt like someone stuck a blowtorch into my ear, i finally was given… yep, tylenol, which did the trick. the IV antibiotics weren’t likely to start to work for 24-36 hours. this cycle of chills and fever would continue, like clockwork, every 4-6 house for the next two days. my chills would get so violent that i couldn’t hold a glass of water without spilling it on myself.
in the middle of that night, i was gripped with a strange, horrific pain in my upper abdomen. those of you who know me well, know that i have a pretty high pain threshold. i’ve cried because of physical pain maybe 5 times in my life. and now, here i was, screaming at the top of my lungs, thrashing on my bed like linda-fucking-blair and the poor nurse is doing everything in her power to help me but the on-call doctor isn’t answering her calls and there is very little she can do until an order finally comes in to give me dilaudid, an opioid that is four times stronger than morphine. the drug immediately takes effect, though it doesn’t stop the pain… it just robs me of the ability to communicate or care. so i lay there, responding to the nurse’s questioning about whether it helped with a stream of drool and some gilbert grape-esque grunting.
the reason this incident is so significant is twofold. first, the single dose of dilaudid resulted in me not being able to hold down ANY food for the following day and a half. this made my hospital stay that much more fun. here’s a pretty picture… having your parents rock up to your hospital room as you are clinging to the side of the bed, simultaneously puking and peeing yourself. thank god they had brought me some fresh clothing from home.
the much brighter side of the abdominal pain was that it called for a CT scan. as i may of may not have mentioned in my previous post, the plan was for me to be on the targeted therapy, and if my symptoms didn’t worsen i’d have a scan in three months to check things out. now, here was a chance to actually see if the magic eight ball was telling the truth. the day after my scan, the doctor came into my room and said,
“well, the CT came back, and the radiologist didn’t see anything.”
of course, i took this to mean… ‘anything new.’
“so, any chance you can tell me how my other tumors look? they were up to four centimeters at last scan… do they seem to be… i dunno, like, smaller than that?”
the doctor cocked her head.
“no, jen, I mean, he didn’t see anything. i wrote in your history and he was looking right there… but, I don’t want to say anything too soon…”
i got it. she was busy. she probably hadn’t communicated directly with the radiologist. she wasn’t MY doctor, so she didn’t want to give me false hope.
“YOU!” I pointed to justin, the adorbs twelve-year-old med student by her side. He nodded. “I have a job for you. Go down to the radiologist and tell him this… as of three weeks ago, this woman had four large tumors, two in her stomach and two in her small intestine. on this scan, do you see THOSE tumors?”
when justin returned the next day, my last day in the hospital, he wore a shit eating grin on his face. “the radiologist does not see any sign of metastatic disease in your GI tract.” He delivered this line with authority, with pride. i mean, of course, what twelve year old gets to deliver such momentous news to a patient?
i sat there for a while, kind of slack-jawed. first off, i’m not sure how accurate the scan was, since i puked up the entirety of the contrast fluid i drank to prep for the test. secondly, it can’t be 100% real until it has been confirmed by my team at NYU. but…. seriously? is this the universe’s way of saying “hmmmm…. let’s see how fast we can make jen’s head spin this time around… mwahahaha.”
so after that lovely news from the med student, i left the hospital with a prescription for cephalexin, an oral antibiotic, to which i had an immediate allergic reaction that resulted in a head to toe skin rash. oh the good times, they do keep coming. i went to see melissa the next day, and she reassured me that these results are probably real. the tumors are probably gone. although whether the fevers were the result of infection or side effects from the meds is not absolutely clear, which is why we are, right now, treating both possibilities, and as soon as it is all resolved, i will re-start the targeted therapy drugs. and here is where i asked the new question of the hour…
“Is this going to be my quality of life going forward? Will the side effects be this bad? Because if those four days in the hospital are any indication… if that’s the trade off for not having cancer… I don’t think I want it.”
melissa reassured me that it was only so complicated this time because of the possibility of infection because of that fucking manicure. going forward, at first signs of fevers, i will temporarily go off the drugs, treat the symptoms quickly, likely with steroids. tomorrow i will find out for certain if the tumors are gone. and if they are (for which i am granting myself the rare gift of unbridled hope), then i will take my emotional puzzle pieces and rearrange them (yet again) accordingly.