Before I start rambling, the concise cancer status remains positive, in the sense that it isn’t progressing, and many of the known metastases are dying off. But it’s still a long and uncertain road.

Cancer is an Emotional Roller Coaster

Having cancer is a roller coaster ride. Last time, I was enthusiastic about the progress I’d been making and feeling good that I wasn’t on anywhere near the same trajectory that my mother went through when she died within a year of finding out she had lung cancer. (She was exactly the same age that I am now.)

This time, all that’s gone and I’m back to feeling helpless and defeated.

What happened? Nothing really. Just my perception changed a bit. I got a new MRI of my brain, a three-month checkup after I had gotten Gamma Knife radiation on the remaining cancer spots in my brain.

The main problem is that I misunderstood what was going to happen when you zap cancer spots with radiation. I thought, oh, that kills those cancer cells and that’s that. Well, not so much, it turns out. It kills some of the cancer cells and shrinks the spot of metastases.

So when I got the brain MRI results showing that the two little spots of cancer (measured in millimeters, not centimeters) are still there in my brain, albeit smaller than before, I thought… oh wait, the cancer battle in my brain isn’t over yet. I thought that battle was already won.

To be clear, from what I’ve read, these results are exactly what should have happened, and a success from the doctor’s perspective, but it still took me by surprise. I somehow thought the spots on the scans would magically disappear. Not so much.

That was the first reality check.

The day after I received the brain MRI results, I had a consultation with an eye surgeon about getting the cataract in my left eye removed. Standard stuff. Just like I did before with my right eye. In the end, they agreed that I had a cataract and it should be removed. I’m more-or-less blind in my left eye these days and I had to wait two hours for that conclusion. Sigh.

What I found depressing was how many other patients in the waiting room had someone with them. I was not only one of the youngest people there, but also one of the only people there without a helper. On the day of the surgery I’ll require a driver to and from the place, and potentially a driver the day after as well. It all reminded me of what an unbelievable chore it is to get some types of healthcare without family or friends who can drop everything, drive you around, and sit around in a waiting room.

Then, a few business days later, I got a CT scan of my chest to check the progress on the lung tumor. The tumor has shrunk again, but not very much compared with the last CT scan. I found it rather disappointing and depressing. (Though, again, it’s completely in line with doctor expectations and what they want.)

That would have been bad enough, but I received a phone call later in the day about the CT results, which is always an ominous sign. If the results are in line with expectations, you don’t usually hear about them for up to a week. But this time they found a blood clot in a big vein somewhere around my pelvis or abdomen. That meant I had to start on blood thinners right away, and they informed me of signs to look for in case the blood clot breaks away and I need to go to the emergency room. Fun.

Adding insult to injury, it’s turning into autumn and the days are getting shorter, which is something I hate. I absolutely loathe the predominant darkness and sharply slanting sunlight angles of the winter months.

It also rained for a bunch of days in a row.

It all added up to a fairly depressing second half of the month, and I struggled quite a lot, only clawing my way back to some semblance of normalcy in the last few days, just in time for the fifth chemotherapy infusion.

Phone Rambling

For my fifth infusion treatment on September 30th, there was a significant delay because of processing my and everyone else’s blood work. This resulted in a lot of writing on my phone which is interspersed throughout this post.

If you’re not aware of how a chemotherapy infusion treatment goes, it works like this: You arrive at the infusion center, and they draw blood to do an assortment of tests to measure your suitability for the chemotherapy. After that, typically you’ll go to a different room and talk to your oncologist or a representative thereof to discuss your progress and talk about any changes that might be required. That takes a half hour or so.

After that, you wait for the lab to process all the blood tests, which can take an hour or so. It’s often long enough to go out and grab something to eat, if you’re confident you’ll be able to find a parking spot when you get back, that is. (Hospital-type places have the worst parking imaginable, imo.)

Then you go into another room and get the chemotherapy drugs, which takes another hour or so. Then you can leave. It’s a lot of waiting, even on a normal day.

But the waiting in my 5th chemo infusion was interminable because of delayed bloodwork results, pushing everyone 2-3 hours behind schedule. In the end I had to wait from 10:30 to 2:45 to get started on my chemotherapy. You’re just stuck in the healthcare machinery and there’s very little you can do but wait and wait and wait. I mean you could reschedule but, you know, you’ve got cancer and you kind of need these cancer drugs in a timely manner.

So you enter the waiting room game. The waiting room game is this: Sit in a semi-uncomfortable chair by yourself in a waiting room for hours (2+) and try not to look nervous or upset or bored or attention-seeking. I’m better at it than some, but not as good as others. A phone helps a lot but after a certain point, I even get bored doing things on my phone. I have no social media and almost no games on my phone, so I have to entertain myself by, for example, writing notes like these, or looking up lab results in my healthcare portal app.

Sometimes you see people who appear to lack the life skills to wait 15 minutes, let alone 2 hours. Jittering legs, changing position every 5 minutes, sighing a lot, etc. Like they’re just on the verge of taking out their personal inconvenience frustrations on someone else.

I’m thankful that I don’t usually have those issues, but I feel like I could if I didn’t expend effort to constantly check myself to make sure I’m not tapping my fingers too much, or bouncing my legs, or accidentally making eye contact with someone 5 feet away who’s clearly just as bored and impatient as I am.

I feel like I was lucky to have been born before cell phones and the Internet and even personal computers, so I still retain some of the skills from my youth of spending long periods of time by myself after school with no external stimuli. Back then I would read D&D books, or fantasy and science fiction books, or draw, or write (by hand), or some other inward-focused activity. Later I spent a ton of time practicing guitar. I guess I watched television too but I remember doing that more in my later teenage years. I didn’t enter the world of computers until I was around 16 or so, and I didn’t have my own phone line until I was 20 or so.

Anyway, one of my favorite tricks to occupy my brain without a phone while waiting is looking for patterns in ceiling or floor tiles. That combined with processing the general background noise of medical staff going about their day is usually enough for me to zone out for a while. Sounds usually occupy me more than sights.

During recent MRIs I’ve taken to mentally singing favorite songs I know by heart. There’s nothing to look at during an MRI. It doesn’t bother me, but there’s a reason they ask you about claustrophobia before those things. It’s almost a sensory deprivation chamber and I can easily understand how it could freak people out. For the brain ones they try to lock your head in place and cover your face with a kind shield, and they give you ear plugs to dampen the rather loud 70s sci-fi noises of the machine. It’s a pretty solitary experience and it goes on for quite a while.

But I digress.

Gaming

Wait, Saudi Arabia is buying Electronic Arts? That seems like pretty big news.

I find myself largely uninterested in PC gaming lately, and more interested in PS5 gaming. Its just so much easier. Except for that pesky issue of the controller hurting my left thumb. Luckily I get bored of playing most games before it becomes a big problem.

I installed Nightreign on the PS5 and found it the same as the PC version: Mostly uninteresting. It’s definitely a game for groups. But its kind of fun to toodle around while watching football.

Some other games I’ve installed and almost immediately dropped after a short time include Darkest Dungeon, Stardew Valley, Solasta, Hollow Knight, and Assassin’s Creed: Valhalla.

But I don’t want to go back to the PC. There’s something about sitting in an office-style chair with a mouse and keyboard in front of a monitor that’s not very comfortable. It feels more like work than play, especially when I add in the potential for recording what I’m playing.

It feels very much like a waste of time to play any game without recording it. Most every game I play “plain” I immediately forget what I played and almost never find it interesting enough to keep playing.

And yet I rarely feel like producing a game recording