Checking In: 2024-01-15

Checking in for 2024-01-15:

Last week my intention was to exercise at least once a day. That intention got side-lined a bit by my health and my desire to put my focus on getting my most important work done. So I'm shifting my focus to working on things like the Pepper&Carrot RPG and the Hearsay engine, as well as crafting some Interactive Storyworlds. There's other things that also need my attention but those are the ones that I feel the most compelled to work on.

Inertia is a hell of a drug. It's been difficult for me to restart my projects. Part of this is a little bit of frustration with the Regorafenib (nee: Stivarga, Regonix) that I'm taking. I feel like I need to start my day with trying to eat a meal that is "perfect" for this drug to do what it needs to do. I've mentioned that this meal needs to be low-fat so JoDee went through the trouble of trying to find skim milk before we got inundated with our snow on Friday into Saturday. Unfortunately the skim milk that JoDee got had already separated, so what I was looking at was even more watery than regular skim milk. What was even more disappointing was that this farm tends to make premium milk. It was pretty surprising to see it separated. Fortunately we got some replacement milk so I was able to have some cereal with milk. Let me tell you, skim milk is kind of terrible. I grew up with this stuff because my mom was adamant on following a low-fat diet. What was in my bowl was pretty disappointing overall. I'll keep trying this but the enjoyment may take me a while to get there.

I know this is a whine. I'm lucky to have the ability to choose and the ability to try to accommodate this drug. But it's difficult when you've become used to the good stuff.

One of the other issues with the Regorafenib is that my voice is absolutely trashed. One of the more common side-effects is hoarseness. I don't even sound sexy-hoarse when I've blown out my voice; I just sound like a way-less-cool Miles Davis.

One thing that is slightly irritating to me is AllianceRx's decision to try to follow up about the Regorafenib. I got a call saying that there was important information from the pharmacist. OK, I'll bite. What information is this? Was there a recall? Should I not take it when I am taking it? Inquiring minds want to know. So I waited for the pharmacist to hop onto the line. Once she did and we exchanged "information we both know to verify that I am who I say I am" they start launching into asking me about the side-effects that I'm experiencing. Keep in mind that I'm sounding like a way-less-cool Miles Davis and it takes a lot to project my voice for a phone call. As she goes through this I could feel my irritation rising. I remember saying "No, I have an oncology team taking care of this", as my warning that this whole conversation was pointless from my perspective. I finally explained that talking on the phone was physically uncomfortable for me and that I pay other folks good money to make sure I'm not going to spontaneously combust while taking these drugs. I must reiterate that pharmacist puts the pills into the bottle or it gets the hose again. I don't have time for folks playing doctor like this. I understand that they're "doing their job" to try to ensure that folks who don't have a good relationship with their doctor can get help but this isn't my situation. I have no issue getting a hold of the folks at Cancer Care Associates to let them know something is amiss. Again, stick to shipping the pills on time and I'll be happy.

This week I have an appointment for my Epoetin alfa (nee: Procrit) shot and an appointment with a cardiologist to try to address my blood pressure. It's still remarkably high and I'm hoping that Dr. Timmis looks at what drugs I've been on to fight my cancer before making proclamations like "lower your salt" or some other blanket statements for a 50+ year old man. We'll see how that goes.

More as I know it.


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