Good Morning Folks. I realize it has been a while since I last posted, but my world has been turned upside down in the last few days. On some level, I knew this would be hard, but I am not sure I was fully prepared for what it feels like when your body betrays you. Every day has been its own wild ride. I’ve been taking notes because, in theory, I will be going through the same feelings and symptoms at the same time each rotation, and more than anything, that has me dreading the next four months. Can I really do this seven more times? What will even be left of me when I am through the other end? Nothing about this process is easy or comfortable, and it is honestly a struggle to keep sustenance in me. At this point, I am down 50 lbs from my highest weight, and that is just a start. I have no clue where I am going to end up at the end of this journey, because it definitely feels like everything I am going through is accelerating this process, whether or not I want it to. I had a bit of a scare on Friday as my blood pressure meds pushed me down into dangerous territory, so I have completely halted those for the time being and am not sure if and when I will start them back up.
I am not even sure what this means for my blog right now. This is easily the longest gap I have had in writing for a long while, given that it has been five days since my last post. Essentially, all of last week was a wash, and I am not entirely certain how much that will change over time. I keep thinking I will hit a point of equilibrium with the changes my body is going through because they will be cyclical, and that at some point I will be used to the rollercoaster of killing off cells and waiting on new ones to grow back. Every day has been different than the last, but not the same level of better or worse on a progressive scale. I had it in my head that the worst days would be the days actively taking chemo, and then after I finished that, it would be a progressive recovery of functionality, where every day would build upon the previous. That does not appear to be the sort of curve that we are dealing with. Everything just takes so much longer than it normally would, because I keep having to rest between actions. It isn’t that I “can’t” do things… just that the actions bring me to cold sweats and make me need to take pauses in between every micro action. I woke up at 6 am and immediately started getting ready. It was not until around 7:15 that I made it upstairs with breakfast, and everything in between was “do something” and then take a seat for a bit to recover from the thing I just did.
Writing is how I deal with things. I am in part sharing this with you, my readers… because it is my instinct to do so, not necessarily because I want pity or suggestions. I think we have all been around friends and family dealing with cancer in various ways, and this is just my time of life to deal with it. However, the one thing that I can offer is a perspective, as I write through it to process the experience for myself. I’ve always said that I can get used to anything, given enough time and repetition, and I am hoping that this cancer rollercoaster will be one of those things, or that maybe my body will get better at bouncing back. Right now, it is just so broad the impact… because it feels like every single muscle and every single bone… aches at a deeper level than I have ever experienced. I know logically, those are cells dying off and regrowing, and ultimately, I am going to go through this every single round. It feels like when I was a kid and would have massive muscle and bone aches right before a growth spurt. It would also be hilarious if I grew in height from this, but I don’t think it works that way.
On the gaming front, I have cleared all of the Harbingers and am up to Aberroth, but just cannot bring myself to push past and kill him, because I stopped caring enough about it. The build that I am playing is far from immortal, and right now… given my mental bandwidth, I think I need an immortal build to enjoy myself. I could roll a second character and futz around for a while, but I think I might have reached the point where Last Epoch has run its course for me at the moment. There are so many vectors to scale my build on, but they all require massive amounts of effort to accomplish. Were I playing trade, I could just save up and buy whatever I needed, but I do not play trade in this game. So instead, I might just sunset the game for the moment and move on to other things. Maybe if I run across some other build that I just absolutely have to play, I will give it a go, but for the moment, I think I am going to wind things down in Eterra.
That means that I am largely back playing Path of Exile, because the level of engagement works for me. Before the Last Epoch season started, I got my build to a point of almost being immortal, and as a result, I can just go through the motions and collect loot. There are still a bunch of challenges that I want to knock out so that I can upgrade my hideout decoration. I can slowly chip away at these while I am otherwise incapacitated, and feel like I am doing something… while mostly just faffing about. What worries me is that I have four months of this ahead of me. Four months of barely getting by as my body betrays me, and none of this sounds like a good time. I need gaming to keep me sane, but I am going to have to find easy gaming options because I just cannot function at a high level right now. I was naive in that I expected the between week to mostly be getting life back to normal, but so far it is anything but. Maybe as things move forward into the week, it will improve significantly and rapidly, but every day has been a new series of sensations. I am going to realistically also need to start probably forcing myself to work out some, for fear that I lose critical muscle mass each time I kill off cells and regrow them.
Anyways. I am a fucking mess, friends. I will get through this because I have entered the “only way out is through” territory, but holy crap was it not what I was expecting.
The post Every Day a New Betrayal appeared first on Tales of the Aggronaut.
Good Morning Folks. Yesterday was my first round of Chemotherapy and I took it at this massive cancer treatment center. While the floor was relatively empty, I took a quick photo of the cubicle across from me and specifically timed it when no one else was in the line of sight for privacy reasons. This floor was massive, and I did my math correctly; there are around 120 of these cubicals, and by the time I left around noonish, pretty much every slot was filled. These were serviced by around 30 nurses with a handful of roamers on each side. It is consistently amazing to me just how much cancer is happening in order to support a center like this. The crew continues to be amazing, and there was even a floater roaming around constantly seeing if we needed anything. She made a run through the cubicles with a box full of snacks asking if anyone wanted anything.
The chair shown was way more comfortable than I expected it to be. It reclined a bit and had both built-in heat and built-in massage functionality. At 6’4″, my legs stuck out too far to be able to support the footrest fully extended, so I mostly just sat there in the default configuration. I got to the parking lot of the cancer center around 6:30 am, and they opened up around 6:45. I had to make a trip to the Lab to get my port hooked up, and before that, a quick visit by the finance office to sign some waivers before starting. I was seated on the infusion floor by around 8:30, but the actual process did not take place for a bit. They were waiting on my lab work to get back, and given how many people were actively on the floor at that point, it makes sense why it might have taken a bit of time. Initially was given a bolus of a steroid and a long lasting anti-nauseau med that should, in theory, last for three days before I need to figure out if I have to take any of the prescription meds for the same purpose. After this ran through my system, I had to wait around 30 minutes for everything to cycle before I started the next phase.
I am taking a treatment package known collectively as “Folfox” where the first round is a dose of Oxaliplatin, which takes about 2.5 hours to cycle through. The Oxaliplatin actually goes a bit quicker, but there is a bag of a vitamin mixture that is given at the same time, which took a bit longer to finish up after the first bag was completed. However, they were able to crank up the delivery rate once it was the only bag running. The worst part about all of this is the fact that I had to go to the bathroom simply due to the fact that they had pumped me full of so much fluid. I thought MAYBE I could wait it out, but essentially I had to unhook the pump and wheel it into the restroom and then do my business in as careful of a manner as possible. The pumps themselves were battery-powered, so they would continue to work while unplugged, at least for a short period of time.
The next step was to hook me up to my portable party ball of poison, which would then deliver the fluorouracil (5-FU) over the next 48 hours. Because I got a later start to everything due to labs, I will go back about an hour later on Thursday to unhook things. They carefully fished the line for the take-home chemo edition through the bottom of my shirt so that I could change clothing more easily when I got home. This is not my particular pump, but showing a drained one that I found on the internet, and I then mosaiced out the information on it. Essentially, the elastic bladder around the center of the pump deflates as the medication drips into you, and overnight, mine shows a significant loss in total bulk. You have to maintain a certain elevation of the pump so that things continue to drain successfully. The biggest problem that I have personally had is trying to sleep while this is attached to me, because I am terrified that I will kink a cord, fail to maintain the height difference, or one of the cats will puncture it while they attempt to love on me. This is exacerbated by the fact that they give you some rather lengthy hazmat instructions on what to do if it gets damaged.
When I got home, I played this fun new game of… is it a chemo side effect or am I just exhausted? Due to nerves, I woke up around 3 am yesterday morning and could not get to sleep. So by the time five rolled around, I was pretty freaking dead to the world. I think I went to sleep around 7:30 or at least attempted it, but given the awkward nature of the whole situation, I am not entirely certain how much sleep I actually got. I kept having to get up to pee thanks to the constant trickle of fluids into me throughout the night from the party ball. The other problem that I dealt with was the fact that the Oxaliplatin was no joke. There is a famous side effect where there is a nerve pain reaction to cold, which causes neuropathy, and the more often it triggers, the more likely you are to have it permanently. I had turned up the temperature of the house, but I had to do this again to around 75 when I got home, because picking up a metal water bottle immediately triggered this effect. So what constitutes “cold” is a really broad range of temperatures. I need to get a jug of water that I can have sitting out at room temperature that I can then fill my water bottles from, because I cannot drink tap water at the default cool temperature.
I am awake, but I am honestly not sure how much longer I will be. As I said before, I did not sleep hardly at all last night, and I am not sure how much work I will actually be able to get done today. I normally sleep on my belly when I am getting good restful REM sleep, and I cannot do that while hooked to this pump. I am ultimately going to have to get used to this nonsense because I have seven more rounds of this, and there is no way in hell I am going to survive it if I have to keep going sleepless for 48 hours. A lot of my pre-game jitters were due to the fact that I did not really know what to expect. This whole ordeal is going to rapidly become rote, and that should help considerably with the whole not getting much sleep the night before thing. The hardest part at the moment is my inability to shower, but I plan on taking sponge baths today and tomorrow. I will probably wear a beanie/tuque in tomorrow when I go to get everything unhooked because my hair is already rather jacked up due to sleep and the lack of a shower.
You might ask yourself… Bel, why are you sharing so much information about this process? Well, I figure it serves two purposes. The first is to document this for my own purposes, and the second is to demystify the process for anyone who might be coming along after me with colorectal cancer. There is also this negative side effect of viewing people dealing with cancer as being slightly less than the normal human beings that they are. I write through pretty much everything that I deal with, including the hard things like cancer and the death of my spouse. Seeing me writing about it, I hope makes you realize that I am still the same person I always was, that I just have a new piece of bullshit to deal with. I am really hoping that 2027 is a more chill year because the death of a spouse in 2025 and cancer in 2026 is pretty fucking awful. Right now, more than anything… I just want some damned rest.
The positive is that, for the moment, there is nothing that I can really peg on chemotherapy specifically. I just have a general sense that I was run over by a truck, and feel generically awful. There was a big part of me that expected to feel like I was dying inside once the proper poison started seeping into me. If my math is correct, my low point is going to be Friday, and then after that, it will be an upward trend of recovering pretty much everything. I am hoping by Monday, I will be mostly back to normal or at least well on my way. For this exact moment, there is nothing that I am really experiencing that I cannot account for as general exhaustion and the fact that nature is having sex… and trying to destroy me with allergies. I figure that will change, and I will probably talk about it as it does. I am hoping to be able to at least take a nap today… but I might just take the second half of the day off and try to rest. This whole process sucks… but so far slightly less than I was expecting it to.
The post Cancer Boy in the Chemo Cubbie appeared first on Tales of the Aggronaut.
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.
The post Cancer Boy in Chemo Land appeared first on Tales of the Aggronaut.
Good Morning Folks! I hope you all had a wonderful weekend. This Mixtape is a week late because, quite honestly, last Monday I forgot entirely that I had one sitting waiting in the pocket to be released. However, it seems like destiny might have shone upon me because this morning is going to be a bit of a mess as I have a very early medical appointment, and don’t really have time to bang out a proper blog post. I am hoping to return to weekly releases after this one again, because I enjoy making these and honestly… I end up listening to them as much as any of you might. Now, to preface my explainer as to why I make these… I have always loved the craft of placing songs in a specific order to create a unique mix that matches a specific mood or theme. Oftentimes, these end up with an anchor song and then attempt to make something that flows together with that single song. Others, like today, are more just that I have been in a specific mood and chose songs to go with that mood. I’ve explained this theory a bunch of times by now, but I don’t necessarily take for granted that someone has read every blog post, or honestly ANY of the previous Mixtape Mondays posts.
27 – Fear Loathing Flesh
If you have consumed any of my posts to date, you might have gleaned that I am dealing with a colorectal cancer diagnosis. It’s really hard waking up every morning and seemingly hearing about another person who has died from this disease, and it feels really prevalent. I am sure this is just selection bias… for example, I had never noticed a Nissan Quest on the road until my sister-in-law got one, and then I saw them constantly. Brains are great at pattern recognition when you are looking for something specific. I’ve been ina pretty dark place over the last few weeks because I am effectively in a holding pattern with no forward momentum yet… and what feels like a ticking time bomb inside of me. As a result, I have been listening to much darker music lately, and this is a mix that more or less fits that mood. This mix honestly caused me to find a song that was completely new to me, because none of the US streaming options seemed to have Melt by Front 242, so instead I substituted a really interesting cover by Helalyn Flowers. Probably my favorite thing is when one of these Mixtapes turns someone on to a new song or musician that they had never heard of before, and I feel like maybe this one has more chance of that given that it is crossing a few different musical worlds.
The funny thing about this Mix particularly, is that it has what I would consider to be a “phantom anchor”, because this did start off with Down In It by Nine Inch Nails being a sort of thread that I was pulling upon. However, the more songs that fell in place, the less and less that song really felt like it fit anymore. So I removed it and replaced it with Reptile that seemed to fit much more neatly into the emerging theme. I am pretty sure this is not the first time I have attempted to make a mix with that song, but I never actually ended up creating anything that flowed in the way that I wanted it to. Tomorrow is probably going to be an emotional post, because it has been a while since I have done one of my big dumb dumps of feels posts. So be forewarned. I did not sleep super well last night because Gracie has decided that she needs to scream instead of going to sleep, and I know that I did not get proper sleep until after midnight. After wrapping this up, I am going to start getting ready to leave the house and go off to my early morning appointment. I hope you all have a wonderful week, and one way or another, this is going to be a bit of a week of reckoning for me and my “cancer boy” journey.
As always, however, you can find the full list of Mixtapes over on my Archives, and I love it when people listen to them and comment about them. Hopefully, I will have yet another new mix next Monday.
Mixtape Mondays Archive
The post Mixtape Mondays: Fear Loathing Flesh appeared first on Tales of the Aggronaut.
