I have been informed that my last post was "depressing"

Emily has informed me that my last post was "depressing".

It wasn't mean to be, really. It was more an effort to reflect the reality of the situation to everyone.

I know that many of my coworkers, who I interact with more frequently than most anyone else, don't really understand. It's easy to see why not. I just disappear for a few days every couple of weeks, and then come back to work. I still have my hair (though I have lost quite a lot). I don't "look like I'm dying" or anything. But one day for some random reason I got into a one hour conversation with a coworker about it all and he was rather surprised at how serious the situation is.

So, hopefully everybody knows now.

It sucks, but hey, what am I going to do about it?

Another long hiatus

This post is going to be short since I want to go to sleep in the near future.

It's been another long hiatus. I should have some kind of resolution to write more often here about my comings and goings. I feel like I lead a fairly predictable life so I feel like there's not a whole lot to say!

After my last post, I had another scan 3 months later and it was not good. I went back to my FOLFIRI+Avastin regimen. I did consult with several other oncologists again, but decided to stick with what had been working rather than try anything new. I did that for 3 months, and had another scan maybe 3-4 weeks ago.

It was sort of so-so. Things didn't seem to get worse, though they didn't get amazingly better. Certainly not the "complete" response I had the first time. This is of course not good news, but not the terrible news I was expecting. I am constantly steeling myself for the worst possible news because it then makes anything else good news. I'm getting another 3 months of the same therapy to see how it does.

Essentially the goal of my treatment is to keep the disease from getting worse. There is no cure for it. The best anyone can really hope for is to keep it at bay and not killing you for as long as possible. Of course, "as long as possible" for a 27 year old has a different meaning that that for a 72 year old.

In the interim 6 months or so I've had to deal with the unfortunate realization that I wasn't "in remission". It was sure nice at first to greet the total radiographic response as evidence I was another wonder case. But it wasn't meant to be and it ended up being painful having to re-accept that indeed I (and Emily) would be dealing with this likely for the rest of my life.

I am constantly thinking about all the bad things that are just waiting around the corner for me. Right now I am on the 1 of 2 possible chemotherapy regimens that are broadly known to be effective against my cancer. It's also the one of two that you can take indefinitely, so long as you can put up with it. The other one has a sort of lifetime dosing limit; eventually, you just have to stop taking it because you will be unable to deal with the side effects further and/or it will kill you on it's own. So, when/if my current chemotherapy regimen ceases to work, I'll have to switch to the other one. And even if it would work forever, I'd eventually have to stop. Then we're in clinical trials territory, I would assume. Anyway in my head all of these logical lines mostly end up with my untimely death. Kind of sucks really, but at least I've accepted it. I'm not sure everyone else is as okay with it as I am, though!

Of course, I'm not looking to die anytime soon and will be willing to subject myself to way more than most people with this disease would think of, much less be physically capable of handling. And of course I'm hopeful that the current course of treatment continues to be effective for the long haul. It sucks, but if I have to spend 40% of the rest of my life getting chemo, it's definitely worth it for the other 60%. Broadly, I'm happy about all the things in my life. It's just that damn thing called one's health that I'd like to change a bit.