Checking in for 2024-01-10:
I didn't blog yesterday because I had a paracentisis appointment early in the morning and promptly took a three hour nap when I got home. I also had the Michigan!/usr/group meeting that evening so most of my efforts were directed at getting ready for that.
The paracentisis appointment was odd. I got my blood pulled (via my port) for lab work. Overall the labs looked similar to what I've seen thus far (anemia, low platelet count, etc.). Another nurse practitioner told me about the procedure (which I told her that I'd read a bunch on the internet. I joked that I had advanced degrees in this procedure now. No, I think internet "research" is anything but research, but she paused and realized I was joking). After she explained the procedure in more detail than what the internet described she had me sign a document and disappeared. With everything ready to go they wheeled me back to the ultrasound examination room. The nurse got some warmed up gel (appreciated) and then did some initial scans to see if there was any fluid eligible to be collected. The nurse then grabbed the person who would be doing the procedure. They both explained that there wasn't enough fluid in there to be collected. I told them I've never been more happy to have a procedure aborted than this moment. It seems the Lasix did its job and the fluid that was left in there was unsafe to pull out. They wheeled me back, disconnected my port, and I was on my way. While I was there I stopped in to Cancer Care Associates to get my Epoetin alfa (nee Procrit) shot. After getting worked up about the whole ordeal I was relieved that I didn't need it. I promptly crashed on the bed and took a three hour nap.
I've been feeling overwhelmed as of late. Part of that is because I've fallen behind in my projects (the Pepper&Carrot RPG, working on the Hearsay engine, etc.) and part of that is because I've been dreading taking the Regorafenib (nee: Stivarga, Regonix) that showed up today. You know that you're getting some serious drugs when they come with not only a packet of how to take the drug but also a complete professionally done welcome kit from the manufacturer. The Lonsurf came with what I refer to as "The Basic Set" , which was three booklets, a thermometer, and special pill boxes to help you distribute the pills accordingly. The Regorafenib comes with a teal pouch (which I'm sure JoDee will steal because it's pretty damn cute if I do say so) containing a booklet with instructions for how to take it, socks (for applying lotion to your feet), Dr. Scholl's inserts for your shoes, a coupon to CVS for Udderly Smooth, and some additional warnings. The pills themselves don't look like much but the side effects seem like more of the same (diarrhea, rocketing blood pressure, etc.). What's really concerning is that these drugs also come with a warning that some serious shit can happen with your liver in some patients. Since my liver is already a very unhappy camper this is a bit concerning to me. But, again, I need to trust that I have the help that I need to make it through this. I'm not going at it all alone. I have a support team in Cancer Care Associates. I don't believe they'll let me suffer needlessly if there is a problem with this drug. But I'm also worried that I'm running out of options for drugs to help stave off the cancer. I keep seeing things like "advanced cancer" in the description of the drugs that are being used to treat this. "Progression" is also a word used in the nurse practitioner's notes. I wonder how many more "good" days I have before things take a terrible turn.
I've also been noticing some other symptoms which I'm chalking up to both my exercise and my disease progression. Things like some sharp pains in my sternum, pain in my lower back, and some acid reflux. I've also noticed that sometimes the veins in my hands will turn blue. That's usually before bedtime and just after I've been crouched on the toilet so I'm chalking it up to that position putting some extra strain on an already strained system.
I've been noticing myself wanting to lay on the bed every so often, not because I'm tired but because I just need to clear my head and take a break from things. Honestly I could go another week without taking the Stivarga, just to ensure that everything starts returning to normal from the Lonsurf, but I know that's likely not an option. Aggressive diseases require aggressive measures. I remember how worried I was about the Lonsurf doing damage to me and I managed to come through with some damage but still able to do things like make this blog post and stand on my own two feet. I will persevere and keep going. One thing that I have in abundance is dogged stubbornness.
I've been practicing drums for the past few days. Today I just took a five minute walk in the basement. I might play drums for a few minutes today, just to keep things limber. I'm really trying not to overdo it, but when I'm behind the kit I want to do 30 minute practice sessions. That's a quick way for me to do myself some major harm if I'm not careful.
Ever onward.