Cancer Boy in Chemo Land

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Good Morning Folks. I went back and forth about whether or not I wanted to make this a proper blog post, but seeing as I have folks who read this blog but do not follow me on social media platforms, I am pushing forward with it. I guess a quick rundown of the last few months is probably in order, in case someone missed the chain of events. On January 21st, I had a routine colonoscopy, and one of the things that came out of it was the diagnosis of a cancerous colorectal tumor. There were a few paths that were outlined, but it all depended upon the specificity of my condition as ot which one we could go down. Effectively, there was what I called the “golden path” that was “surgery-only” and five to eight days in the hospital, and then I moved on with my life. There was also a path that involved four months of Chemotherapy, two months of Radiation, a Surgery, and then two months of being on a bag while things healed, and a follow-up surgery to hook everything back up.

For the last fifty-five days, I have been in limbo, not knowing which path I was headed down, and quite honestly… this is the worst part of the current situation. For as many mental health issues as I have struggled with in my life, I honestly do pretty well at adjusting to reality once it is forced upon me. However, what I do not handle super awesomely is waiting and not knowing. I’ve been through so many things over the last couple of months. Everything was going to hinge upon an MRI that would allow the surgeon to stage the cancer, but when it came time to get said MRI… no one checked the fact that I was bigger than the average bear and as a result was too damned big for their MRI machine. So I had to get scheduled for a totally different machine, which was out of network, and I had to pay a lot of the costs out of pocket. In the meantime, I have had a CT Scan, a PET Scan, Genetic Testing, and many bloodwork draws.

Because of limited scheduling, I have been going down the path of the industrial cancer treatment industry and attending orientation for chemotherapy, and even starting tirzepatide, a GLP-1 agonist, to help reduce my weight and lower the complications of the eventual surgery and radiation. I’ve been terrified of everything that is looming on the horizon, all the while not knowing at all which path I was going to be pushed down. On March 6th, I finally had the MRI, and I figured any day I would get the call from the surgeon outlining what we were going to do. Tomorrow I am scheduled for outpatient surgery to get a chemotherapy port grafted to my body, and I really had to know something before that, so I could either go forward with it or cancel it. Everything that I knew based on my reading and based on the results of various tests made me think that I was a borderline case, that it could go one way or the other and there was nothing that I could do to really predict the results.

Last night at 5:30, I got a call back from the Surgeon. In his eyes, it had progressed past the point where we can comfortably do the “surgery-only” route. So the two options in front of us were his suggested Chemo > Radiation > Surgery > Bag > Surgery route… OR Surgery > Bag > Chemo > Radiation > Surgery. There was no path that did not put me on a bag for some period of time. That is really the thing that terrifies me the most in all of this. If I were going to have to do Chemo and Radiation anyway… I might as well follow the path that was going to have me on the bag for the least amount of time, and also reportedly gives me the best chances for complete remission. So tomorrow at 7:30 in the morning, I will be having a twilight sedation outpatient surgery, and will come out with a fancy new multipurpose port, which they will be using for Chemo and blood draws during this whole ordeal. I’ve had a PICC line before when I was really sick in the hospital, and from what I understand, this is essentially a permanent version of that.

So that is the bad news, and I guess let’s talk about the good news. As I said, I have had a battery of tests, in part because when they did the CT Scan, there was a weird, unexplained nodule on my 7th rib on the left side. The CT and PET Scan combined show that the cancer is very well contained and has not touched any of the lymph nodes or metastasized to any other area of my body. The cancer itself is Stage II and shows high signs of “curative” treatment, because, in orientation, I have learned about all of the catch phrases that indicate your likelihood of survival. Technically, I have T3N0M0 Invasive Moderately Differentiated Adenocarcinoma. These are words that I have googled quite a bit, which I know is probably bad for my mental health, but various comorbidity charts put the 5 year survival rate at 90%. I have no genetic markers for cancer, or at least no known ones, so in theory I have a very good chance of walking out on the other side of this alive and well. It is just going to be a bit of a miserable mess getting there.

Another positive is that the particular treatment path that I will be on does not generally lead to hair loss. This is at least somewhat of a bummer because I was hoping it would come in curly afterwards, like happened with my sister-in-law. I will be on something called FOLFOX, and its major side effect is that, apparently, anything cold will feel like shards of glass and cause severe nerve pain for around the first five days after treatment. It is also going to decimate my immune system, meaning that I will have to be hyper-cautious about any sort of injuries or being around anyone who might be sick. There will also be diarrhea and nausea, but I will be taking some meds to counteract that, hopefully. Essentially, I will be on a two-week rotation, where I will go one day, get 30 mins of chemo in the office, and walk away with a pump that will deliver the rest of the chemotherapy to me over the course of 48 hours. After that, I will go back in and get everything unhooked from my port and begin the resting phase, returning essentially two weeks later to start over. I will be going through eight rounds of this, which will span four months.

I’ve been told that I should take notes during my first cycle because essentially every cycle after that will follow the same pattern. So the good days should land on the same days, and the worst days should follow as well. Five days in is supposed to be my low point, or my “nadir,” when my immune system and blood/platelet production are lowest. After that, everything should be improving until I then return to start it all over again. The orientation was honestly pretty freaking valuable because they prepped us to have a bunch of over-the-counter drugs on hand to deal with the side effects. Additionally, they gave some clear markers of when I should be calling in and getting help and when I can reasonably tough things through. 100.5 is apparently the magic temperature where I need to be taking immediate action in an attempt to stem an infection. I have not run fevers very often, so hopefully this is still a measurement that works for me. It has been wild just how standard this process has been, and how seemingly good they are at treating cancer now.

In other news, the Tirzepatide has been going pretty well. I give the injections to myself on Wednesday mornings, and I am on my 4th week, with next week being my first scheduled increase in dosage. As of this morning, I have lost roughly 28 lbs, and have started some light weight training in the hopes of staving off muscle loss. That is one of the side effects that folks worry about, and that is also one of the side effects of the chemotherapy that I am on, so I am doing some very simple exercises with weights every day. Nothing major, just ten-pound weights, but the repetition seems to be making some minor improvements already. I’ve also drastically overhauled my diet, which I assume is a big part of what has led to such rapid results. I’m only on about half of the final therapeutic dose, and already having significant losses. I’m forcing a lot more fruits and vegetables into my normal routine, and I have come to love a cold apple. I will be super sad that during my treatment, I will not be able to tolerate that due to the nerve pain nonsense.

The loss of my spouse last year already caused some significant shifts in my life, and cancer now… is going to cement even more. I am trying to look to the future and some of the goals that I really want to accomplish once I am on the far side of this situation. For example, I have a friend in the Chicago area that I am going to visit at some point, because that is also a reasonable driving distance for Cyl, one of my two adopted siblings. I also want to make good on the threat to go visit “Erasure” in the Houston area, since my previously planned trip got cancelled due to all of this. I am hoping to be a much smaller person at that point, and that will likely make travel way more enjoyable than it ever has been. I am trying to handle all of this the best that I can, but I also know it is going to be really fucking hard. However, it is eight months of my life… and I can endure anything.

Anyways… now you know as much as I know. I’ve been mostly radio silent about what is going on, because nothing was really certain. I will likely begin chemo before the end of the month, and after that, I will be on a routine path. As things change, I will probably talk about it, but I do not really want my “cancer boy” journey to dominate this blog. This is still a blog about the things I am interested in, mostly, and while cancer is now a part of me… I don’t want to make it the only important thing. If you’ve made it this far, thanks for sticking around.

American Rapture

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Good Morning Folks. Have you ever ended up with a book that you have no clue why you have it? That was me with American Rapture, and at some point, I acquired the audiobook version of this… probably on a sale… and probably because I saw someone recommending it somewhere. Last week, I needed something to take my mind off the medical system hellscape that I find myself trapped in, and I thought the cover looked cool and decided to yolo it. This was both a great and an awful decision at the same time. I was not fully prepared for the book that I was about to read. I knew that it was horror and vaguely zombie apocalypse adjacent. These are two things that I do enjoy quite a bit, but what I was not fully prepared for was the unique spin on both.

The novel centers around Sophie Allen, who is an extremely sheltered, ultra-conservative Catholic teen, living somewhere in the vicinity of Spring Green Wisconson. I had family in the Madison area, and have visited a lot of the locations that were mentioned in the book, including The House on the Rock that American Gods also seems to be fond of. Having been there, it is a fucking trippy place, so I get why authors would set scenes in novels there, because it feels like it is a place that cannot really exist. The ultra-conservative Catholic thing is a bit odd for me personally, because here in Oklahoma, the Catholic church that I grew up in was deeply liberal with a borderline Heritical priest that even though I am no longer religious… I owe a lot of my mental development to. Sophie is a twin and lives in what feels like a fairly cloistered community, attending a parochial school, and is eternally scarred by this early moment where her twin brother Noah was ripped away from her. Turns out he had a bad case of the “gay,” was fairly violently shuffled off to some “Sacred Heart” hospital to “cure” him. You could copy and paste this storyline onto Southern Baptist, and it would effectively work the same, so I was able to apply my own personal experience to the tale.

Where things get really fucked is when it comes to the virus. It is sweeping the country, but poor Sophie knows nothing about it… because sheltered by awful parents and has completely controlled access to the internet both at home and through the Nuns at school. So when she starts noticing people getting hot, bothered, and randy… with glassy-eyed stares, she is completely clueless as to what is going on. American Rapture features a plague that is effectively 28 Days Later, but instead of turning the infected into rage machines that want to attack everything in order to spread their “bad blood”, this one makes folks want to aggressively copulate with anything and everything… including their own reflection comically. At this point, you are thinking “Zombies that fuck? Bel you have accidentally ventured into sexytime literature”, and you would be wrong. There is nothing “sexytime” about anything that is depicted in this tale. Sure, there are descriptions of engorged members… but they have more in common with Lovecraftian horror than they do with a dimestore novel. All through the lens of someone who does not even understand their own body, let alone the functionality of sexual intercourse.

If this were all that was going on in this novel, it would be pretty forgettable. Walking Dead, But Fucking is a curious premise… but the end result is way more insidious than it sounds. In a Zombie film, someone has to die in order to turn, but with this virus, they can go “randy” at any moment… making pretty much every place where the remaining law enforcement is trying to corral people into a bad idea. This would be its own challenge were it not for a group called “St. Michael’s Crusaders”, who come from the same religious cloister that Sophie grew up in, and have decided that this is all “God’s Plan”. They have made it their mission to burn the “sinners” by effectively setting on fire every shelter that the ragtag group of survivors seems to find along their path. So we end up contending with random sex machines and zealots in red robes trying to set things on fire… or just use good old-fashioned firearms… in equal parts. I spent a lot of time with this novel, wondering why exactly I was continuing on… only to realize at some point… that it was way more compelling than I expected.

American Rapture at its core… is a book about coming to terms with religion and the awful things that it makes people do. It is a book about what has collectively been referred to as “deconstruction”, as you come to terms with harmful thoughts and ideas that you had been implanted upon you at a very young age, when you had zero control over them. This is largely something that you see in ex-Evangelical circles, but at least in the terms of this book, it focuses on Catholicism. Like I said before, my experiences growing up Catholic were wildly different than poor Sophie’s, but I do get some of the same trappings of my experience. The programming largely missed me, and that was in large part because of said “Heretical Priest” telling me that it was more or less okay to not believe or be uncertain of my belief. I’ve spent my adult life vacillating around various states of unbelief, and I still deal with fairly religious parents who are unwilling to accept this. My wife was Southern Baptist and still deeply faithful, and we came to a level of acceptance that we were each on our own path. I still spend a significant chunk of my Sunday editing the sermon for her church to post it every day, because I understand the role that faith had in her life, and that it is important for some people.

My problem with Religion is the hateful things that people do in the name of it. This book covers some of that, especially when it comes to LGBTQIA+ folks. Realizing I was bisexual has been its own journey, and has frankly taken me further from faithfulness. While the trappings of this tale were way more extreme than anything I ever personally experienced, Sophie’s journey through realizing that she was taught some pretty fucked up things still resonated. Collectively, Horror is one of the best genres for exploring uncomfortable topics, and traditionally, you regularly find it coming to terms with subjects on the fringe of society. So it makes sense why a book about “zombies that fuck” would really be this story about queer folks just trying to survive in the world, and ridding themselves of the harmful notions they were raised under. I am thankful to the online community, because they have been the family that I found a kinship with… when my own was not exactly ready to deal with the thoughts and struggles I was tackling. Maybe there is a world where this book lands in the hands of someone who needs it and can help them start to dissect their own feelings.

Do I suggest you read this book? I honestly do not know. It took a very specific set of cultural experiences for it to really resonate with me, and it might not with you. It was compelling enough that I wanted to devote time on my blog to talk about it. Will this entire experience be deeply blasphemous in the eyes of someone from a more sheltered religious upbringing? Probably… no scratch that, absolutely. It does, however, make me want to track down some other things from this author and give them a spin. I know they run in the same circles as Chuck Tingle, so it makes a heck of a lot of sense the sort of book this ended up being. Camp Damascus is still one of the hardest novels that I have finished, and it took a lot out of me. This was a much more chill experience… minus the gratuitous zombie copulation.

Mixtape Mondays: Mired Moody Mindset

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Good Morning Folks. I hope you had a most excellent weekend. Things are a bit weird here because things have taken a turn towards the cold. While I did not get any, my folks who are a bit further north got some snow yesterday. I am still in a holding pattern, but rapidly running out of time. This coming Thursday, I am scheduled to get a chemo port installed, and as a result, I am losing hope that there is a “surgery only” path forward. As a result, I have been in a fairly dour and sedate mood, and this week’s mixtape fits that pattern. I continue to confront the concept of my own death because the thought of being severely immunocompromised, on top of my normally malfunctioning immune system, is some scary shit. I know I can make it through this, and I have started making plans for some things I am going to do when I am on the far side of this. For example, I have a group of friends in the Chicago area, and I want to make a pilgrimage up to see them. I also really want to make the trek down to see “Erasure” in the Houston area, but that was already on the table since that trip got cancelled due to all of this bullshit happening. I figure so long as I can keep some good plans in my mind, I can focus on those while I deal with whatever awful crap I have to deal with in the coming weeks.

28 – Mired Moody Mindset

This mix largely exists because of an anchor song, like these mixtapes often start. I was sitting in the car listening to the radio before going to a doctor’s appointment, and “Sultans of Swing” came on, and I stalled long enough to listen to the entire song. I’ve always liked Dire Straits and specifically that song, and it made me realize that I had not really dived into a lot of the more moody and almost wistful in a melancholic manner style of music that I really seem to love. For example, up until this point, there was not a single list that I felt I could really place Big Dipper by Cracker on, or the song that always brings me to tears… Jimi & Stan by Strand of Oaks. These mixes show you a piece of my soul each time, and this one… drills straight through the core of me. It is through these mixes that I have also found a lot of community with people who have listened to them and struck up conversations about songs that they have not thought about in decades. If I am going to get through this, I am going to need a lot more of that community, which is a challenge given how fucking awkward and introverted I am. Thanks for being here throughout the years, and if you regularly listen to these mixtapes… thanks for sharing in my nonsense. I guess I will stop stalling and get to the track list.

Track List

  • 01 – (Don’t Fear) The Reaper – Blue Öyster Cult
  • 02 – The Chain – Fleetwood Mac
  • 03 – Heroes – David Bowie
  • 04 – Sultans of Swing – Dire Straits
  • 05 – Message in A Bottle – The Police
  • 06 – Who’ll Stop The Rain – Creedence Clearwater Revival
  • 07 – Gimme Shelter – The Rolling Stones
  • 08 – Little Wing – Jimi Hendrix
  • 09 – Big Dipper – Cracker
  • 10 – The Night We Met – Lord Huron
  • 11 – Red Hill Mining Town – U2
  • 12 – Here Comes Your Man – The Pixies
  • 13 – Cherry Bomb – John Mellencamp
  • 14 – Jimi & Stan – Strand of Oaks
  • 15 – The Waiting – Tom Petty and the Heartbreakers

Listen To It Yourself

It feels like I am working through the stages of grief in mixtape form recently. I just might not be going through them in exactly the same order as normal. I might be in a bit of the bargaining phase because I have been doing a bunch of things in the hopes of improving my success through chemo. I know the Tirzepatide that I am on causes muscle loss, so I have started doing a bit of light weight training, and on some level, I am hoping the universe notices that I am trying and gives me a fucking break. It is weird how fast this mix came together, honestly, because some of the songs are ones that I have not really thought about in years, but suddenly popped into my mind as I was assembling this. For example, Red Hill Mining Town is phenomenal, but I had not thought about that since the album it came out on was on regular rotation for me. Similarly, Cherry Bomb by John Mellencamp is a phenomenal track, but it had not popped into my head in decades. I have decided that I will be disowning “The Librarian” though because he referred to this as “Yacht Rock”, and I present that there is not a single Christopher Cross or Michael McDonald track on this list. This is way more thoughtful than that particularly vapid movement of music.

I have a few more posts that I know I want to make this week, including talking about a book that is sort of awful but at the same time thought-provoking enough that I want to talk about it. As always you can see the full list of my mixes over on the archives.

Mixtape Mondays Archive

AggroChat #561 – Seeking Humans

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Featuring: Ace, Ammosart, Ashgar, Belghast, Kodra, Tamrielo, and Thalen

Hey Folks! This week we started off with some discussion about ITER-8 a Tower Defense game that has a bit of a different spin.  From there Tam talks about The August Before and how it is essentially the reverse of Packing.  We reprise our Pokopia topic from last week and talk about how Tam’s kid is probably in for a sad revelation as she desperately hunts for the missing humans.  Bel figured out what is missing from Last Epoch and we talk a bit about the importance of a seasonal journey of some sort in forever games.  Tam realizes that he has solved Star Trek Online and how it is way less fun for him now.  Finally we talk a bit about Path of Exile and specifically Kodra’s journey into winging a build by trying to figure out which skills work with Holy Strike.

Topics Discussed

  • ITER-8
  • The August Before
  • Pokopia
  • Last Epoch
    • Importance of a Seasonal Journey
  • Tam Solves Star Trek Online
  • Path of Exile
    • Kodra winging Holy Strike

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