State of the Bel: Round Three

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.

Dark Math and Infusion

Destiny 2_20170918214544

I finished the night last night at 287 power, putting me well within striking distance of at least 290 this week… and with some additional luck in getting some really good drops 300.  For the moment I have standardized on the gear set that I am wearing and I have been eating everything that gives me slightly higher light levels to pour into it.  This morning I thought I would talk a bit about the infusion game in Destiny 2 and my frustrations with it.  The longer I play Destiny 2 the more I think of it as a continuation of the previous game to the point of largely feeling like a big smooth reboot.  There is a lot of gnashing of teeth over this point but I have reached a sort of equilibrium in my attitude.  I realize there are going to be some people that cannot get past this fact and I am guessing they really were not that big of a fan of the original game in the first place.  There are certainly things that I am not the biggest fan of, but overall I am really enjoying my time spent wandering around…  and weirdly looking forward to starting over with the PC launch and doing all of the things that I wish I had done this time around.  For me at least the chronology of Destiny looks a little something like this.

  • Year One – Destiny Launch/Dark Below/House of Wolves
  • Year Two – The Taken King
  • Year Three – Rise of Iron
  • Year Four – Destiny 2 Launch

Now back to the original topic I wanted to discuss…  Infusion.  During Year One it was not really a thing even though there was a limited form of it available in the ability to “power up” weapons with ascendant shards…  which was less a version of infusion and more a version of delayed gratification making you level your weapon further after getting it.  Side note… they are doing something like this system with an exotic shotgun that you get from the raid but that is a discussion for another day.  During Year Two they introduced the infusion system but made the calculations behind it extremely frustrating.  The closer you got to the level cap the less light you were able to squeak out from each infusion.  I remember keeping a vault full of random gear to step new items that I got up… without losing a bunch of potential light in the process.  For those who didn’t live under the system… say you had a 300 light level exotic item.. and you wanted to infuse a 335 item into it…  the resulting item would be 324.  If the first item was a legendary item…  you would end up with 328 making this weird penalty on using exotics.  During the tail end of Year Two and all of Year Three this changed and you started to get the complete face value of every infusion, meaning in that same scenario… of a 300 exotic and a 335 infusion fodder… you would end up with a 335 exotic gaining full credit for the item you were pouring into it.  The previous infusion system was pretty straight forward in that any primary could infuse into any other primary…  with the same being true for armor pieces.  Meaning I could throw my trash at my alts and help funnel their light level up.

Now we scan forward to Year Four and a bunch of things have changed that make the system as a whole way less beneficial to the players.  Year Three was pretty much the pinnacle of the system as far as I was concerned, it felt good and didn’t cause needless strife to the players.  In Destiny 2 however… they made a bunch of tweaks that seem like nonsense.  Firstly they removed the element of simplicity, meaning it was no longer slot based infusions and instead depended upon the specific item type.  This means if you need to bump up your auto rifle… you are going to need another auto rifle.  Similarly it means that if you want to pour additional power into your hunter arms…  you are going to need another pair of hunter arms.  To further confuse things they added a system of mods into the game, and at face value these seem like awesome things.  It lets you take one piece of gear and tailor it to your exact needs without having to wait for the ideal item roll to drop.  Where this complicates things however is when it comes to legendary mods, because not only do they add perks to an item…  they also had 5 power levels.  This means that if you have a 200 item without a legendary mod and a 225 item with a legendary mod…  feeding the 225 item into the 200 item will result in a new power level of 220 because the mod gets consumed in the process.  The first time this happened to me I was confused as hell and extremely angry because it felt like they had taken a step back to the lossy days of item infusion.

Where things get even weirder is the fact that in the past there were hard item level caps that you could not breach.  For example right now in Destiny 2… blues stop giving you upgrades initially a 260 and purples at 265.  That however is a somewhat fungible barrier, because as your power level trickles up…  so does the level at which items start dropping.  I am not entirely certain why things drop at the level they start dropping… but for example last night the maximum power I could hit was 287 but the blues I kept seeing were 277.  The lowest power item I have equipped is a 282 helm…  so I do not think it is based on that given that there was a period of time where I kept getting items that I could infuse into my lower armor pieces to keep pulling my total up a bit.  There is some manner of dark math happening behind the scenes and I think that is what is making this process feel less certain and because of that less “good” than the previous system.  We reached peak infusion during year three and all of these tweaks just feel like they were screwing with a solved problem.  I am hoping at some point we revert back to just having slot based infusion rather than item type based.  The whole item levels and drops thing however I am not even sure how to straighten that out because it seems super wibbly wobbly.  All of this said however…  Bungie has tweaked things significant given time and I have a feeling that they will also tweak this product to roll back some of the weird parts.  It is just a little frustrating at this point however to be entering what is legitimately year four of the game, and it feels like they forgot some of the lessons they learned during the first three years.  I mean maybe this is the influence of Blizzard, since they seem to love fixing systems that were not broken by ripping up the pavement and installing brand new and improved pavement that requires a completely different car to drive on it.  Whatever the case I am still loving the game and have been spending almost every non-work waking moment playing it…  but there are just frustrations that build up as with any new experience.  I thought I had gushed for awhile… and its probably time for me to start unpacking some of my baggage as well.