folfox

State of the Bel: Round Three

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Good Morning, Folks. You are getting a Diablo IV Screenshot because that happens to be the game I am playing the most at the moment, but this is very much not a gaming blog post. I figured it had been a bit since I had done a “State of the Bel” post, as I am referring to them in my mind, where I catch you up on how things are going with the nightmare that is cancer. Prior to yesterday, I would have told you things were going swimmingly and infinitely better than the first two rounds. This morning, that answer is a bit more complicated, but we will get into that. Essentially, rounds one and two of chemo were met with external factors that complicated things. During round one, I fought with my blood pressure and was trying to figure out the correct amount of meds to take to keep it down to healthy levels, but not drop it to the very fainty 70/40 that I was running for a few days. Solving this problem… of course, uncovered other issues.

I was woefully anemic, as I simply had no red blood cells to transport oxygen through my body. As a result, every time I would stand up, I would feel incredibly woozy for a bit, and getting up in the mornings was pure hell. The answer to this problem was to start giving me Iron Infusions. These legitimately look like giant packets of soy sauce, but are pinkish in hue when they flow into your body. The effect is that it looks like you are bleeding in the wrong direction. After round two, there was a rush infusion to try and get my levels up, and since it moved the needle, when I did round three, they just included the soy sauce along with my normal treatments. This seems to curb a lot of the negative effects that I was feeling, and quite honestly, on the day I get a fresh iron infusion, I feel sort of like I can take on the world. That shit is magical, and it feels like I am hyper-oxygenated for a time, which is a weird feeling for a lifelong severe asthmatic who is likely ALWAYS running low on oxygen.

For those who are curious, this is what infusion days look like:

  • I arrive, and they open my port, aka jam a giant needle in my chest. Prior to leaving the house, I have applied lidocaine cream to the area so that I really cannot feel a thing.
  • First up is a long-acting anti-nausea medication and a steroid to help get me through some of the low-immune-system moments. This takes around 15 minutes to deliver.
  • Next up, I get my Iron Infusion, aka the bag of soy sauce. This takes 30 minutes, and occupies what previously was a dead point because there has to be 30 minutes between the anti-nausea meds and the first of the chemotherapy.
  • There is a bit of a break, but next up is Folinic Acid in one bag, and Oxaliplatin in the next, and these are both hung and set to drip together into me. This process is the big haul that takes two whole hours. At some point during this, I have to get up and tote my bags to the bathroom because they have pushed so many fluids into my body at this point, I am about to burst.
  • After a little break, they give me a bolus of Fluorouracil, aka 5-FU, which takes about 15 minutes, similar to the steroid round.
  • Last, they hook me to the portable pump filled with Fluorouracil, and make sure the valve is against my skin because, for some reason, the heat of my body is what makes the pump work. This will be tethered to me for 46 hours, and I refer to it as the evil lemon, because it looks like a weird lemon. I feel very much like I have a Harkonnen Heart Plug, because I have to do everything while being aware that I have a pump attached to me that goes directly into my heart. Act normal.

So, back to the story… one of the new side effects that sprang up during round two is that I was having a lot of visual issues. Namely, for the first five or so days after the chemo treatment, I was having visual flashes off the right side of my body. It felt like someone was flashing a strobe just outside of my visual range. Additionally, I had some very black line floaters appearing in the same eye. They looked like impossibly black threads that would snake around my vision. This rightly freaked me the fuck out, because my family has a history of retinal detachment, and this was already a point of anxiety for me. After some googling of Folfox(the colloquial name of the treatment) symptoms, it seems that in some very rare occasions, it could lead to damage to the retina or optic nerve. During one of my lab and doctor visit days, I explained these symptoms, and they also seemed equally concerned, but they were happy that they went away on their own. They suggested following up with an eye doctor.

That is what I did yesterday. Last year, I switched to a new eye doctor who operates out of the small town where I grew up, which is only about a thirty-minute drive from where I live. Yesterday’s visit cemented that I made the right decision because she remembered the family history of retinal detachments and took things extremely seriously. Even taking a moment while my eyes were dilating to research the specific ocular things that Folfox can do. Essentially, I got a clean bill of health. Everything inside my eye, apparently, looks extremely healthy, and for good measure, she checked my prescription, and it had not really deviated from last September. Specifically, she said that the most common problem with Folfox is that it attacks the optic nerve, and explained what the symptoms of that would look like to me. It would be either a partial or complete blurring of vision in the eye where it is happening, and a fading of colors, either in saturation level or shifting what colors look like.

Now, one of the confounding variables is that this all happened during the second round, but did not happen during this third and most recent round. The one change between rounds is that I have now had two bags of iron infusion, and have raised my red blood cell count considerably. Talking with the eye doctor, essentially everything I was experiencing could be attributed to extreme anemia. Everything I was experiencing could be caused by a lack of blood flow and oxygen to the eyes. Essentially, the eyes are one of the furthest points in the circulatory system, and if there is anything wrong at a blood level, it can cause visual artifacts and flashes. So in theory, the continued Iron Infusions have helped to stave off some of the visual hallucinations that I was dealing with. If nothing else, it felt good to get a bit of peace of mind that everything was mechanically fine with my eyes. One of my greatest fears has always been losing my eyesight. I figure so long as I can see and so long as my brain is functioning appropriately, I could deal with pretty much anything else.

Collectively, this third round of chemo has gone so much more smoothly than the first two. I feel like I have bounced back more quickly from the infusions. I am still dealing with the weird cold reaction symptoms, but my energy levels as a whole have been much higher. The only negative is… that it feels like I have this very finite pool of energy. Because of how busy yesterday was, and that I tried to cram too much into too short a period of time, I overdrew the bank of energy. As a result, I am paying massively today for this. After mostly doing great for the last several days, I was back to it, taking an hour to get ready this morning, because I kept having to pause between actions. I am sure I will recover from this as well, but I am just not used to having such a limited amount of stamina for doing anything. That has, without a doubt, been the hardest part of chemo in general: accepting the fact that right now, there are just going to be some things that don’t get done in the time frame that I wish they could.

So at a high level… I am doing much better than I was during the first two rounds. However, I still have to realize that I am compromised and need to temper my hubris. I had offers to take me to the eye doctor yesterday, but I stubbornly drove myself and also paid a visit to my parents afterwards. On top of working that morning, it was just collectively too much going on for the state in which I am. I’ve said before that effectively I have 10 shitty days each cycle and 4 good ones… and I need to respect that. I was on day 7 of the 10 shitty days part of the cycle, and I knew that… I just thought I was doing well enough to ignore my own limitations. Each rotation, I learn something new about myself and about the treatment, so I will just file yesterday away as another of those learning moments.

Cancer Boy in the Chemo Cubbie

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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.