another oncological update and that time i shit my pants at football practice, and at 4h camp, and in the way back of a station wagon
waiting for infusion #4 with a beautiful view of southeast portland.
y’all it’s been a roller coaster of a month. full of highs, lows, a little dread, and some tiny “well deserved breakdowns”. at least, that’s what carol called them.
my cousin and oldest friend cheri, visited. she’s been on her own cancer adventure for the past couple of years. so we had a lot to commiserate over. we spent so much of our childhood together. it’s nice to have the kind of people in your life where you can go years without seeing each other, but then when you do, it’s like no time has passed. we spent a lot of time shit talking trump and watching videos. and it felt a lot like high school when i’d drop by her house after an evening of cruising eminence and we’d watch headbangers ball or 120 minutes and shit talk reagan. that felt great. i still had a decent appetite while she was here, so we ate a lot of good food around town. fuck cancer, cheri and keep on keeping’ on.
at my last infusion, there were two interesting outcomes. first, my sister in law, a nurse practitioner, had done some research and found a newly available drug that could be paired up with nivo, the immunotherapy that i’m currently on. in clinical trials, relatlimab by itself didn’t have any affect. however when paired with nivo, people generally had better outcomes than with just nivo alone. so i brought it up with my oncologist and he said sure, let’s give it a whirl. he was worried that the insurance company would poopoo it, since it’s usually a first line therapy, and since i’d already been on ippi/nivo, they might be sticklers. so all month, that was in the back of my brain: will they or won’t they.
the second “worrisome” outcome from the last infusion was that one of my liver values was pretty high. the dr scheduled another round of bloodwork for a week later, saying that if the liver thingy was the same or maybe a *little* higher, then all “good”; we can continue the treatment. however, if it’s a lot higher we’ll need to pause and do another round of high dose prednisone. ugh. the following week was a pretty nerve wracking, thinking: will my liver or won’t it. finally, though, i got my blood drawn and got a call call from the doctor the next day saying all good. in fact, the liver number was back to normal. whoo! shit yeah johnny! i felt great and was pretty ecstatic about the outcome.
the next day, all the skin fell off my lips. believe me, i said what the fuck, too. several times. it was like the worst chapped lips you can imagine. zombie lips. a couple days after that, i started getting intermittent bouts of dry mouth from out of nowhere. i wasn’t even remotely dehydrated, i’ve been keeping on top of that shit. after a few days of intermittent dry mouth, it had turned into 24 hour dry mouth. i did some research and saw that it’s a very uncommon side effect from nivo and that it can end up being permanent. fucking bummer, because it’s super annoying. talking becomes difficult if i don’t have something to sip on constantly. eating dry stuff is damn near impossible. nothing tastes quite right. by uncommon, the stat was between .03 and .05% of nivo people get this symptom. wheee. when i talked to the dr about it, he confirmed the rarity, saying that during the first nivo clinical trials, they would stop treatment and put people on the old high dose prednisone, but it didn’t help, so now they just keep on rolling. it’s a bummer, but it’s better than the alternatives. some people eventually get their spit back, some people don’t. fingers crossed. when i told him about the lip thing, he seemed genuinely surprised. go me. go t-cells. fuck up that cancer, but try and leave the rest of me alone, ok?
on thursday, i had infusion number four. the insurer was nice and let me have both relatlimab and nivo. here’s to even better outcomes and thanks to my sis melissa! all my bloodwork is within the bounds of my treatments. clearly it’s not all normal, several, and i mean several values are way out of whack, but not unexpected with immunotherapy.
many times in the last several months, i’ve said “i am more tired than i’ve ever been.” and i’d like to say to that guy “you don’t know what the fuck you’re talking about.” because i said that while i was still doped up on prednisone or dexamethasone, which amped me up and masked some of the tiredness.
good omens.
the tiredness really showed when i had some friends in town. i was lucky enough to have john and dale, friends from grad school, come visit me. we’ve been friends, good friends, for thirty years and i can’t really say that about too many people except the ones i grew up with. we spent a week together, went to some shows, and watched, talked about, and listened to a whole lot of music. it was great for my spirits and we had fun, but i just wish i hadn’t been pooped the whole time. i had to nap everyday they were here. during one of the naps, i could overhear dale and carol, in the living room chatting and something about that really warmed my heart. i fell back asleep and had a dream about having a “no evidence of disease” party. dale, john, carol, cheri, and a lot of you were there. my friend jenni showed up to the party with a box of full grown, but mouse sized, white rabbits and everybody was laughing and playing with them. that evening, i told carol about my dream; she likes stuff like that. the next day, we got a random magazine in the mail with a white rabbit on the cover. i’ll take all the good omens i can get.
this coming week is a whirlwind. an mri on tuesday, a colonoscopy on thursday, an mri follow up on friday, and the in-laws are visiting next weekend. i’m looking forward to all of that, but some of them more than others. editor’s note: the mri and follow up have been delayed by 10 days because of staffing issues, wuf.
other than this dry mouth stuff, the eye blob that’s making it hard to read, the crazy fatigue, and brain fog, things are going fine. i’m still tired, and every now and then i have trouble getting out of bed, but i am as positive as ever about the treatments. i have to keep reminding myself that i feel like shit because of the side effects of the treatments, not from the melanoma, that the treatments and my immune system are kicking my ass and the melanoma’s ass.
that’s the end of the update. the rest is just some dumb stuff about pranking baby sitters and poop.
i’m pretty sure that i have a life long, undiagnosed bout of ibs, ibd, colitis, or something. here is some evidence. note: not for the squeamish, but tommy, buddy, keep reading.
hanging at the molloy motel for pirate days in st pete florida. before the shitty nicknames. ironically, i got sand in my eye and had to wear a patch for a few days on this trip.
i got my family nickname on the way back from a vacation to st pete fla in 1972. i was toddling around like a weeble in a diaper in the way back of the family station wagon, rolling up interstate 75, when all of a sudden i let loose a good one. apparently full of necrotic nuclear waste. it was so bad, pop pulled the car over and everyone evacuated into the emergency lane. i gladly don’t remember any of this, but it became the root of all my family nicknames. like pooh, pooh bear, poops, pooper, pooper scooper, scooper, scoops, and that’s just the tip of the shitberg. worst of all, though, was turd bucket. when anybody called me that, especially any of the bethlehem kids, i went into a blind rage. there were two exceptions though, my brother ricky and my babysitter joann. i let rick call me that because the way he said it, i could tell how much he loved me and that it was just a gross term of endearment. joann, however, earned the right.
in the summer of 1980, i went to 4h camp at lake cumberland. it was a glorious week of sleeping in cabins, swimming, no parents, and hanging out with the interesting kids from the other grade schools around henry county and some of the surrounding counties.
on one of the evenings, we’d convened under the main pavilion for a sadie hawkins thing. basically, the boys gathered in a central ring with the girls surrounding them in an outer ring. they would play music (it’s the first time i really remember hearing “funky town” by lipps inc), the girls would skip out of their circle, pick a boy to skip with and they’d take a few turns around the circle, go back to their own circles and then it’d all happen again; the circle of life. i was shy about that kind of stuff, so i always stood back a little in the circle hoping i’d just get passed over, but on this evening my cousin angie wouldn’t allow it. she reached in, grabbed my hand, and we were off; skipping around the circle. sometime during the second lap, i knew i was in trouble. i had to go. bad. so i dropped angie’s hand and took off like a demon towards my cabin. there were bathrooms at the pavilion, so i’m not sure why i chose to run the mile or so back to my cabin. honestly, though, all of my decisions on that evening were suspect.
i ran and ran and ran and began to suffer from the inverse poop law. the closer i got, the more i had to go. i busted thru the door of the cabin, got my pants down, but somehow my tighty whities didn’t make it down. i was three steps away from the toilet when my bowels jettisoned and filled my underwear. i was in a panic and didn’t know what to do. i washed them off in the toilet as best i could, but they were still dirty and they still stunk. i couldn’t just put them back in my luggage. what was i going to do?!? so i did what any idiot would have, i flung them out the bathroom window and they landed in a tree directly outside of and perfectly framed by the window. fuuuck. they were too high up in the tree for me to climb up and get them and too far to lean out the window and get them. and they had my fucking name written in them because mom was a rule follower. i tried to come up with all kinds of excuses, like somebody from some other cabin pranked us by shitting in my shorts, cleaning them, and throwing them into the tree. riiight. in the end, i realized i only had one option. i had to tell the senior counselor for our cabin, glenn. i got cleaned up, went and found him. telling him what happened was humiliating, to say the least. he had a good laugh about it and told me he’d take care of it. we never spoke of it again and that was that.
a few years later, in the summer of 1984, i was at the morning session of a two a day football practice. i’d already worked a couple of hours on the farm and would be going back after practice. right as practice was starting i realized i had to go to the bathroom. i yelled that to the coach, and he said “go around the side of the building.” but i’ve gotta do number two coach! he told me to go back to the locker room and to not take all day. so i started running. and i ran and i ran. there were three bathrooms in the hallway of the gym before the locker room. all locked. shoving each door made the need to go even worse. finally, i made it to the locker room. i was three steps away from the toilet when *bam*. not only did i fill my tighty whities, but also my skin tight and very white terry cloth shorts. i was in another poop panic. what was i going to do? i didn’t have any other shorts put on. i wore these to practice and didn’t have a backup pair. btw, i loved wearing these shorts because they made a few of the seniors very, very uncomfortable. so i washed the drawers and shorts out the best i could in the toilet. then washed the shorts again in the shower, but there was no hiding what happened. so i put the not so white, but pretty wet terry cloth shorts back on, grabbed the drawers to chuck them into the dumpster behind the gym and ran as fast as i could back to practice. when i got there, they were up to the paired stretching part, that’s where some dude helps you stretch your legs and back as far as they’ll go with a pretty good view of your crotch and butt while doing it. i lucked out and we had an odd number of players that day, so i was paired up with one of the unlucky coaches. coach jones shoved and bent and stretched me all around. and never said a word. in fact, thru out the rest of the practice, nobody said a word about it. which is weird, because this group of kids took great glee in teasing the shit out of people for the smallest of things. but nada, zilch, not a single word. one of my brothers was home for a bit that summer working on a deck behind the house. he picked me up from practice and when we got home and out of the truck, the first thing he said was “did you shit you pants?” i ignored him and got dressed for work.
in the end, if you shit your pants, your friends and semi-strangers might have some couth and show you some mercy, probably thinking “fuck, that could be me.” but even a supportive and unquestionably loving family will just saddle you with humiliating nicknames.
the babysitter epilogue
joann was, by far, the best babysitter i ever had. she was fun. we played with ouija boards and talked about witchcraft. we listened to music. we listened to the rocky horror soundtrack. she taught me how to do the time warp. for a few summers she sat for me, her brother keith, and their sister lora sue. we’re fake cousins, my aunt was married to their uncle; they were as close as family as they could be without blood being involved.
joann only had a few rules: be back for lunch, be back before your mom gets home, and just don’t get hurt. i don’t think we ever violated the first two rules, but keith and i were always getting hurt as child daredevils. there were a lot of bike wrecks and we were always trying to jump over something; each other, bikes, cars, creeks in the woods; then there were the bb gun fights, the black powder “experiments”, you name it, we probably did it. joann always fixed us up, and i’d like to think that we played a little part in her becoming a nurse.
keith and i also liked to prank her. always dumb stuff. a woopy cushion. a dribble glass. gum that turns your teeth black (which she never fell for). a cup of water over a cracked open door. the kinds of things you’d find in the back of an old school comic book. but then one morning in the summer of 1981, i woke up with a fully fledged plan and upped the ante. i couldn’t wait to tell the rest of the bethlehem gang, which consisted of me, keith, and our our downtown buddy, todd.
when i was finally able to tell them my plan that morning, they were all in. in 40+ year hindsight, i wish we would have brought lora sue in on the plan, she would have been the voice of reason and stopped me from doing the worst thing i’ve ever done to anybody in my life. but the bethlehem gang was always all gas, no brakes, pedal to the metal.
we waited for joann and lora sue to be watching tv in their living room. we got out into road in front of the house and i slathered fake blood all over myself. i always had tubes of fake blood on hand as a kid, it was never just for halloween. i laid it on thick, using a whole tube. it was coming out of my eyes, my mouth and my ears, running down my bird chest, even on my legs. keith had removed the front wheel from my bike and given it to todd, who was watching for cars. finally, i laid down in the middle of the road, with the bike on top of me, keith screamed “joann, lance just got hit by a car!” and todd rolled the front wheel past me for that extra bit of realism.
a while after "the prank", i had told my brother dennis about it. he wanted to reenact it, but wouldn't let me lay down in the middle of the road because "mom would kill me". 30 years later, when mom found out the real story about this photo shoot, she said "i had no idea you had done this to joann, i thought these pictures were just you and your brother being weird!" i also think that she'd have spanked me had she been close enough.
joann came flying out of the house, with lora sue right behind her, and i instantly knew that i’d made the worst mistake of my very short life. the fear on her face was like nothing i’d ever seen before and i’ve only seen it one other time since; both low points of my life. i jumped up as fast as i could, already crying my eyes out saying “i’m sorry! i’m ok!” over and over again. the closer she got to me, the more the fear on her face turned to anger. finally, she grabbed my arm, looked me in the eye and said “goddamn turd bucket.”
i don’t remember anything else from that day except i think joann made us hot dogs for lunch. and to put the cherry on top of “joann was the best babysitter”: she never ratted me out to my mom. i’m sure she could have negotiated doubling her rate. for what it’s worth, sorry i also stole your rocky horror soundtrack, joann.
oh, and fuck cancer.