another oncological update and my love of back roads
recently i had another mri and on wednesday i had appointments with both my oncologists and, after weaning off the prednisone, i *finally* got my second dose of immunotherapy.
the 7 or so weeks between my first and second doses have been weird and hard. when i got autoimmune colitis from the first dose of immunotherapy (ippi and nivo) they put me on a heroic dose (100mg) of prednisone. the first week on prednisone was great; the colitis was gone and my body felt better than it had in years/decades. i felt like grandpa joe, energized by a golden wonka ticket and ready to pilfer fizzy lifting drink. seriously, every little ache and pain i’ve collected over a lifetime of daredeviling and sedentary tv watching was just *gone*. by the second week, though, the crippling insomnia had started and that just hurt. i had several nights where i didn’t sleep at all; the longest wakeful period lasted 42 hours and i wondered if i was back in grad school or something. my fasting blood sugar was in the diabetic range (prednisone can make you permanently diabetic, i’m hoping that hasn’t happened, the numbers are coming down slowly) and the symptoms were just going to get worse.
weird stuff started happening as i was weaning off the prednisone. all my little aches and pains started to come back. but the worst part was these episodes that would start with the chills that had me shivering like a cartoon character. my teeth would literally chatter and my entire body would shake uncontrollably. the shivers would last about 10 minutes and would be followed by a high fever (102F) and a racing heart (120-140 beats per minute). the fever and heart racing would last 8 to 10 hours, which made for fun sleeping. that was a scary and fucked up feeling. after the second time this happened, i went to the er. they took ounces of blood, gave me two liters of fluids, did a ct scan of my guts, and looked for any infection they could find trying to find a reason for the fever. they used the phrase “occult infection”, which made me laugh, thinking it’d be a great name for a black metal band. in the end, they didn’t find anything at all, none of the cultures they did on those ounces of blood came up with squat. they didn’t find any sign of a cold, the flu, covid, nothing. what fun! they basically said, “dunno man, if it happens again and you can’t keep the fever down, you should come back to the er, also you should start taking tylenol and advil prophylactically to keep the fevers at bay”. fun times. a few days later, it did happen again (i am nothing if not an idiot and didn’t keep up with my prophylactic tylenol and advil regiment), but this time carol knew what to do. she got me into a tepid bath, had an ice pack on my noggin and neck, and this time the episode only lasted for a couple of hours (thanks carol, you rock my world). that was the last time it happened. the medical oncologist said these were most likely caused by my immune system roaring back to life as i was coming off the prednisone.
when i got the results back from my most recent mri, the radiologist had found yet another brain tumor; i definitely didn’t want to hear that. however, on wednesday morning when i saw the radiation oncologist, he had a different opinion. he didn’t think there was a new tumor. time and another mri will tell, but i am more than inclined to go with doctor’s opinion over the radiologist. the rest of the mri results looked great. the new tumor from last time had increased in size by a small amount and was surrounded by blood, which could mean it’s dying. most of the rest of the tumors that had been gamma knifed by marsellus wallace were smaller than last time and a couple were unchanged. that’s all great news. the dr gave me two treatment options: schedule another gamma knife to wipe out the one new tumor that has gotten bigger, or since i was getting back on the immunotherapy, we could wait another month, do another mri, and make the gamma knife decision then. he said either was a reasonable decision, so i am opting to wait another month. that gives the immunotherapy some time to do it’s job and it will probably shed more light on the discrepancy in tumor count between the radiologist and the dr. i am hoping the dr is right.
later on wednesday i saw my medical oncologist and got my second dose of immunotherapy. this time around, it’s only the nivo drug. that’s the one that makes it more difficult for cancer cells to hide from your immune system. it has many of the same side effects as the other drug, ippi, including autoimmune colitis, but at a much lower probability. the fact that i’ve probably had a lifelong undiagnosed case of ibs or mild colitis doesn’t help and puts me at more risk of getting another autoimmune bout of colitis. in an attempt to not tax my guts too much, i’ve been trying to eat better and carol has been finding all sorts of yummy recipes. if the stupid colitis thing happens again though, then i’ll have to stop the immunotherapy completely because you only get two strikes. i don’t want that to happen. there are second line therapies, though. the next of which would be something called “high dose interluken 2”, which requires hospitalization and doesn’t sound like much fun. i’d prefer that my guts can hold out and it doesn’t come to that. come on guts, you got this shit!
a couple weekends ago, we hosted some out of town visitors: carol’s bestie from high school tania and her husband derek, and it was great. they’re both huge music nerds, just like me so we watched a bunch of weird shit on youtube. my favorite part of their visit though, was when we spent one of the days driving the backroads surrounding portland, taking the most indirect routes we could find to get anywhere and listening to and talking about obscure music along the way. it felt really good, just like it did when i would do the same thing with my buddies in high school on the backroads of henry county. the only real difference was that as adults we weren’t getting wasted.
don’t judge too much y’all. my buddies and i may have been idiots in high school, but we were responsible idiots and always had a designated driver, wether we were drinking at the drive inn, drinking at a field party, or drinking while plying the backroads.
i got my love of backroads from my parents. we spent a lot of weekend days driving with no destination in mind, taking circuitous routes to nowhere, listening to the charlie daniels band, david allan coe, glenn miller, and the statler brothers. pop’s taste in music leaned more old school and country, so that’s what we’d listen to; when it was just me and mom, though, we’d rock out to zeppelin, pink floyd, dr hook, the beatles, etc. backroads are more interesting than the main roads. there’s more stuff to look at, you have to drive a little slower which makes it easier to notice stuff, there are fewer cars, and no matter how many times you’ve been down that road, you’ll almost always find something new.
by the end of middle school, when some of my older friends had gotten cars and their licenses, we finally had our own passes to the backroads. with some combination of my fake cousins keith and chuck, my oldest friend todd, and the first friend i ever made on my own, taylor (we met in a tobacco field while chasing a rabbit when we were 4), and a host of other friends, we would hit the backroads almost every weekend night and many summer weeknights. sometimes there’d be a destination, like the lakeview drive inn (i went there 100s of times; i never found the lake and i never watched a movie, it was a place to socialize), a party, a bowling alley in one of the adjoining counties and sometimes the point was to just drive. there was always plenty of the doobie brothers, steve miller, the james gang, mountain, foghat, skynyrd, early times, budweiser, designated drivers and a whole lotta laughs. i didn’t really have that much fun in my life again until i moved to portland, rekindled my friendship with tommy, and finally found carol.
carol and i spend almost every weekend on the backroads listening to classic 70s rock, stereolab, sun kil moon, and neko case, finding our way to estate sales, vintage shops, and far flung eateries. it really is my favorite thing to do. no early times or budweiser involved or needed.
