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.
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