another oncological update, some stuff about chicago (the band), and love letters to terry kath and my wife.
i had appointments with my radiation oncologist on friday and my medical oncologist on monday. both went great, i’m doing well with my various treatments (still hella tired though), and i’m as positive as ever.
the meeting with the radiation oncologist was short and sweet. he explained that the latest mri showed that all the tumors treated by marsellus wallace and his gamma knife are looking good and as expected at this stage. he said that the newly found tumor in my noggin was there when they did the gamma knifing, that it was just too small to be imaged, so they had missed it, that it’s very common for melanoma patients to need multiple gamma knifings in the first six months after the first procedure. basically think whack-a-mole; you whack a bunch, but there are some that are hiding; then you whack them, and the hope is at some point, you’ve whacked them all before any new ones can pop up. when people opt for gamma knife only, they may do it three or four times. every patient is different. in my case, since i’m relatively young, relatively healthy, and already on immunotherapy, then we’re going to wait a while to make any decisions about additional gamma knife stuff. the new tumor is small and has a little ring around it meaning that it’s probably bleeding and the juice might already be working on it; only time and another mri or two will tell. then we had a weird debate about education and the allocation of funds to teachers, me falling on the side of “teachers deserve way more money and are expected to do too much with too little” and he countered with “we spend massive amounts on education with nothing but poor performance to show for it and it’s probably a cultural problem.” dude’s a great oncologist and funny as hell, but i’m glad he’s not in charge of the educational purse strings.
i had more to discuss with the medical oncologist. since the first dose of the double barreled immunotherapy caused a pretty severe autoimmune bout of colitis (alleviated by prednisone), my infusions are on hold until i can get off the prednisone. that’s going to take about a month. i asked him if that was going to be a big deal in terms of efficacy, if the infusions are supposed to happen every three weeks and i’m going to have to wait seven weeks between my first and second, isn’t that going to be bad? he then explained a few things about how the two drugs work, and why having a pause isn’t really going to be a big deal.
there are two drugs involved. we’ll just call them ippi and nivo, because their real names are just random strings of unpronounceable letters. first of all, only 46% of patients get thru all four doses of both drugs; having to stop because of various autoimmune issues mostly brought on by ippi. ippi is the crazed coach that lights a fire under your immune system’s ass, telling it to crush, kill, destroy, and sometimes the coach takes it too far and the home team starts beating the shit out of the hometown fans. nivo is the scout that makes it hard for the for the other team to hide from the immune system. nivo can have negative side effects, too, but they’re generally milder. since my immune system is clearly fired up and ready to murder anything that moves, when i get my next infusion they’re firing the coach and leaving the ippi out of it. so it’ll be up to nivo, the scout, to expose the melanomas tactics. clearly that’s all hand waving and not remotely a scientific explanation of what’s going on, but it’s the basic idea. one of the more interesting aspects of these drugs is that they teach your immune system, specifically your t-cells, how to fight and kill melanoma. they do this in a similar way as vaccines, or a case of chickenpox, etc. these t-cells don’t get used up; they proliferate, which is why a seven week delay between treatments is ok. those t-cells are still in the game, still busting melanoma ass and once i’m back on the nivo, it’ll be that much harder for the melanoma to hide from them.
he also relayed another interesting anecdote to me. he had a patient with a much worse diagnosis than me: the proverbial riddled with cancer kind. she had tumors in her brain, lungs, liver, bones, and other organs. after her second infusion she developed an autoimmune response that was severely damaging her kidneys. they had to stop her treatments completely and she had to go on dialysis. a month later, they ran a pet scan and she was completely cancer free and has been for nine years now. after two doses. and she eventually got off the dialysis. it’s just one patient’s experience, just one data point, but an interesting one. the point he was really trying to get across is that patients with really robust immune responses generally do better in the long run. go t-cells, go! crush, kill, destroy!
finally, he kept the most interesting news for his parting shot. the first thing they do at these infusion appointments is a comprehensive blood check, looking for bad autoimmune markers that could indicate damage to your thyroid, pancreas, kidneys, etc. even though i didn’t get an infusion on monday, they drew my blood and did a work up. one interesting piece of data pertains to an enzyme called ldh that we all normally produce for whatever reason. in patients with melanoma, this enzyme is overproduced by the tumors; it’s one of the biomarkers that they use to gauge the severity of melanoma. the high end of the standard normal range of ldh is 268. before my first infusion, my ldh was 470. that’s pretty high. i asked him how high that was in terms of bad and really bad and he relayed that in some of the worst cases the value can be around 950. ok, so 470 is pretty bad, but not holy shit bad, so that seems like a plus. then he showed me my current ldh value, which is 296; just 28 points above high normal. well damn, that seems pretty promising. it’s just one data point and we can’t read too much into it, but it’s a significant downward trend on a significant biomarker of melanoma activity that happened in 24 days after my first infusion. imma take that shit and run with it.
that’s the end of the update, the rest is just a random story about my love of chicago. chicago was huge in the 70s and they still are in the 2020s, even though peter cetera and mtv did everything in their power to ruin the band (and totally succeeded if you ask me). anyway, their love songs were all over the radio in the 70s and my older brother tim had a few of their albums that i would listen to when he wasn’t paying attention.
even as a popular band on the radio, they were completely unique. unlike steely dan, they weren't futuristic and sophisticated, chicago was definitely a rock and roll band. a septet of blistering guitars, heavy bass lines, a jazzy drummer, a wandering organ, three rotating vocalists, and maybe best of all a horn section that was as integral to the band as the air they breathed. that horn section made those love songs crackle with life.
in grade school, i was especially obsessed with chicago ix, the best of that collects their first 5 years as a band. i can’t really imagine how many times i’ve listened to it in the last 45+ years. the only other albums that come close in the number of listens for me are steely dan’s best of “a decade of steely dan”, black sabbath’s “paranoid”, and hendrix’s “electric ladyland”. anyway, listening to those horn laden love songs as a grade schooler, had me twisting. i couldn’t wait to get older and experience all those feelings. i wanted someone to “colour my world” to share dreams with, a “just you n me” to burn it all down with, someone that could “make me smile” and let the games fade away, someone that when i was far away, i’d be “wishing you were here.” it was the crazed machinations of a precious preteen music nerd who didn’t care if it was a girl or a boy who inspired him and shared his dreams. all that mattered was that adventure awaited and i didn’t want experience it alone. “(i’ve been) searchin’ so long”, it took me 37 years and some tough lessons, but life finally put me in carol’s hands. good things in life take a long time. i finally had the adventure partner i had always wanted and over the past 15 years together, i’ve been “feelin’ stronger every day”. thanks carol, you rock my world.
the chicago epilogue
there’s a whole different side to chicago that i didn’t really discover until middle school. it happened while i was obsessed with hendrix and listening to “electric ladyland” constantly, and reading every article and book i could find about him. i don’t remember if it was an article in rolling stone or creem or hit parader or circus, but there was an offhand quote from hendrix saying that his favorite guitarist was terry kath, calling him “the greatest guitarist in the universe”. i was like “terry kath from chicago? huh. well, those solos in “25 or 6 to 4” and “searchin’ so long” are pretty bad ass, but he’s no leslie west or joe walsh” (i was also obsessing over mountain and the james gang in the sixth grade). the article mentioned their first eponymous album when they were called chicago transit authority. i was more than intrigued. i immediately asked my mom to take me to the record store in the city, because i had an album i needed to buy.
that weekend, we made it to the city and i bought CTA. when i got home and listened to it, my mind was completely blown. holy shit, terry kath might be the best guitarist in the universe (sorry leslie, joe, and jimi)! the whole album is an explosion of screaming guitars and horns. i especially liked their cover of the spencer davis group’s “i’m a man.” a song i always thought was awkwardly macho, but liked anyway, probably because of the line “well, if i had my choice of matter, i would rather be with cats”. i mean, i knew they were talking about other dudes, but i’ve always been a cat lady, so i heard that how i wanted. but the chicago cover. man, terry just steam rolls thru the song with this liquid feel where you’re just sure the guitar has to be on fire and destroyed by the end of the song. on top of that there’s a two minute percussion break, involving the whole band, that’s as good as anything john bonham ever produced (granted that's a seven on one fight, but still). i 100% cried. i had been so focused on the love songs and the horns that i’d really never given the guitar it’s due. i had to read an article about a dead guitarist to get the real scoop on another dead guitarist (terry accidentally shot himself in the head when he was 31, at least he made it past 27, i guess). to bring it all full circle, i’m pretty sure that towards the end of “i’m a man”, terry hits a lick from jimi’s “you got me floatin’” from his album “axis: bold as love.”
the prednisone epilogue
one unfun thing about this big ass dose of prednisone is that sometimes i get the worst insomnia. so so tired, but the sleep just won’t come.
the sleepy but can’t sleep adventure continues.