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.

Doing well

I feel a little bit bad that I never update this anymore. I guess my sense of urgency is gone? Well, in case people are still checking it:

I'm doing just fine.


It's been a couple of months now that I've been off of all treatment and we're basically just playing a "wait and see" game with it to see how things go. My last PET/CT was pretty much fine. There were a couple of possible future trouble spots in my right lung, but they were so small nothing definitive could be said. Maybe they'll be gone next time, maybe not.

I've been very happy that I've been free to do basically whatever I want. I've been working full time and having a grand old time doing it. My energy level has returned. Emily and I went camping last weekend (or the weekend before? I can't keep track).

I've been trying to exercise more. I've been doing alright at keeping a weightlifting schedule, though it's slipped over the last week. I finally got out and rode my bike last weekend. The route I took you can explore here.

My back has been hurting strangely for a while now which sure doesn't make me feel really positive about things. I had the PET/CT though after it started and they didn't see anything wrong and certainly nothing that would explain the weird pain. So I've just been ignoring it and waiting for the next scan to see if things are still normal. If they are I guess I'll have to go see some other doctor about what is wrong with me otherwise. I'm really not all that gung-ho to go subject myself to more doctor visits. I'm also pretty pessimistic about things but I'm happy that I'm enjoying myself now and hope that it stays that way.

Another long break

It has been a long time since I've posted on here. I don't know who still checks it. RSS readers are great for people like me.

John Scofield, whom some of you may recognize by mention in some of my blog posts and his comments here, passed away today. He was in his mid-30s and had metastatic colorectal cancer as well. He switched oncologists a month or so ago to try some more research-y treatment and he seemed optimistic at the time. I never had the chance to meet him in real life. I'm not sure if it actually was, but it sure seemed sudden to me. It's really very depressed, sad, and scary for me personally.

Emily knows his widow from knitting. I hope she has time to post details of when the memorial would be. I would very much like to go.

Things have been going pretty well for me. I've been working a whole lot more and it has been very rewarding to not be stuck around the house so much. My main computer died a week or so ago and I built up a new one but it has been very annoyingly unstable. I don't feel like writing a whole lot more about myself right now, since really what I wanted to do was just reflect on John.

A month gone by

So it's been more than a month since my last post!

Things have been pretty normal, which I guess is good for me.

I had another PET/CT at the beginning of January and it was perfect once again, which of course is good news. Also my CEA level has been very low for some time now.

The new car is very nice, though is have given me a few troubles. For some reason lots of fluids in the car seem to get low. This car is fancier than my last in that it actually has sensors to tell you when something is low, rather than completely gone and damage is being done. The engine coolant light came on and I took it in. They said there wasn't any leak and topped it off. Why was it low all of a sudden? Who knows! Recently the brake fluid light has going nuts, and indeed the fluid was at about the low line. I topped it off myself, though I'm taking it in this week to make sure there isn't anything amiss.

Erin and Perry (sister and brother-in-law) came up and visited last weekend. It was good to see them and spend some nice quiet quality time with them.

Emily's 28th birthday was this week. She opened presents from various relatives and one from me (she figured out what it was! Though, she was there when I bought it.). Then we went out to eat at the Dogwood Grill in Baltimore, which recently reopened after like a 6 month hiatus (don't know why they were closed). The food was very good. We'll have to make it a point to take visitors there in the future!

Friday (Jan 22nd) was my one year colon resection anniversary. Yay! I can't tell if it feels like more or less than a year. Time seems to go by quickly in general even with the chemo and what-not.

Today Emily and I went to the Red Canoe and ate lots of food and came home with many muffins.

The chemo has been catching up with me, 10 months in. My hands and feet started to peel rather badly again the last time I had a dose. I took a one week break because of it, which tossed my normal 2-week schedule off kilter. It was really nice to have another week in there without the chemo. I had forgotten how nice it was to have a sense of normalcy. I've been doing some pretty interesting things at work and am a bit sad to have to stop again for 3 days. That one week break really reminded me what I'm missing out on. I'm trying to stay with the 2-week schedule for at least a whole year of treatment, but come a year or so I think I'm going to push the schedule out to every 3 weeks or something. I'm in no-mans-land statistically, so I'd rather have a higher quality of life and see how it pans out with the cancer. I still won't accept the fact that I'm "better", after having come to terms with a reality (which seems to have been avoided) which was significantly less nice. As much as I wish I were, I have to try to keep things in perspective and remember that even though it sucks a lot, I've got to do everything I can to stay healthy.

I've got another chemo dose this coming week, ick!

The week after this coming one I'm planning to visit a friend from high school and his wife in Raleigh, NC. He's getting his PhD in Materials Engineering at UNC. I've never been there, and though the dead of winter is probably not the best time to visit, I think it will still be nice. I hope Emily can come, but I don't think she'll get the time off work.

We still have our foster greyhound. Emily wants to keep her. Too bad I don't want a dog! I like her a lot, but I definitely don't want the long term commitment she represents. I hope someone adopts her before Emily absconds with her or something!