I wish I wrote more often

I wish I wrote here more often. I probably have things to say. For some reason taking the short amount of time out of my otherwise copious amounts of down time never happens.

Oh well.

Since last February when I wrote my last post I guess a few things of note have happened.

I did three months of FOLFOX+Avastin and had another PET/CT. It wasn't good. Things hadn't gotten any better. Maybe they were a little worse. So that meant that the Oxaliplatin wasn't having the desired effect. I took stock of the situation with my Oncologist and we decided that the best thing to do was to try an eGFR-inhibitor based therapy (which I am eligible for as I have wild-type KRAS). There are two candidates for colorectal cancer in general use: Erbitux and Vectibix. As far as I can tell they are nearly the same. Except you get Vectibix every two weeks instead of once a week. I'm on Vectibix now.

eGFR-inhibitor based therapies are known to cause an acne-like reaction in people. I happened to go to Florida to visit family several days after starting therapy. I ended up with what would definitely be described as "above grade 3" side effects from the medication. It was awful. Definitely not like "just having acne" again. Just a few days ago I got my second dose (I took 5 weeks off to get over the first one). We halved the dose in an attempt to keep the side effects down. So far I am not having any major issues. If I'm clear by the end of the week I guess that'll be great news.

This Tuesday I am going to see Dr. Jeff Geschwind at Johns Hopkins Interventional Radiology about surgical options to treat my liver metastasis. For people with localized metastasis or stage III colon cancer surgical techniques can be very effective for curative effects. Unfortunately I am not in that category. As far as I know the extent of my disease has been a small (~2cm) liver metastasis, a ~3cm lymph node, and maybe possibly two nodules in my lungs. Most of it seems to be pretty slow growing. Indeed, the greatest danger to my long term health in liver failure. Thus I am interested to see what the surgeons think about doing something about the liver itself. There are several interesting procedures that can be used to likely eradicate the liver mass (including some super fancy yttrium-90 "microspheres" that have to be overnight shipped from Australia or something which directly irradiate the mass from the inside).

Like I said though, I am not an "ideal" candidate for this sort of thing since even if the liver mass is completely removed it's not going to be curative. We'll just have to wait and see what the surgeons things. Personally, I'm all about it.

I try not to think too hard about the statistics for all of this expensive treatment. It's depressing. You could spend $200,000 on treatment that, using ensemble statistics, might increase your life expectancy by a month or two. I'm really looking for the 5-25 year range here. I dunno, there's nothing more that I think I can do than what I am. Hopefully I continue to be a statistical anomaly in many senses of the phrase.

In a completely unrelated (to my health) note, Emily and I recently returned from our first real vacation. It was great. We went to Colorado, Utah, and Arizona. We saw many sites of the desert west. Maybe I'll write another post about it sometime.

Maybe it's just the chemo talking

I'm pretty bored, homesick, and depressed today. I have been out of bed for a total of maybe 3 minutes. I don't think there's any good reason for it. I feel alright. I just know that I have literally nothing to do except get cold should I put on some clothes and go downstairs. So instead I choose to stay under the covers and wait for Emily to come home bearing food.

The Oxaliplatin definitely is easier on me than Irinotecan. I felt pretty good yesterday. I still couldn't sleep for crap but I attribute this to the Dexmethasone that I get. The peripheral neutopathy is back, it seems to go away in like 7 days from Monday, so now at least. It is not too intense and is mostly in my fingers and a bit in the back of my throat.

I have been contemplating abandoning our lives in Maryland and moving back to Florida. This what I think is the chemo talking. It would be a huge deal. There are several large corporations headquartered or present in Florida where I'm pretty dern sure I could get a job should I want one. I'd have to talk to their HR people first about my situation and make sure everything is A-OK with that. I don't think my federal "pension" or indeed any survival benefits kick in until 10 years of service (I need to check this). I'm not so sure I'm going to make it to 10 years. Also by an annoying fluke of paperwork and misunderstanding I am not part of the federal group life insurance policy so there is no lump sum of money hanging around to entice me to stay. Honestly, other than the fact that I just really like the particular bits that I do at work, I don't know why I'm here. I get to deal with lots of paperwork and stupid bureaucracy and I get to deal with Maryland winters and Maryland traffic and Maryland parking. Florida I would be close to all of my family members, especially when it's going to count. Oh yeah, and I would expect I'd probably get a pay hike by switch to a private company followed by the 0% Florida State Income Tax rate, followed by a lower cost of living, followed by Publix.

Emily would of course have to make big changes too. Move Addie back to Florida, quit her job, find another one in a really tough market.

I would probably have to engage in "strategic default" (or a shore sale, I don't even really know the different) on my house mortgage here which is something completely anathema to my personal system of integrity. But I guess difficult times call for difficult measures. The bank will be in the same place when I die anyway, so I guess I would just be moving the date up for them.

Then we'd have to pack our entire house into a big moving van and go.

Then I'd have to find a new hospital and suite of doctors and ongologists. I like my oncologist a lot, so that is a bit deterrent to leaving as well.

It all seems like so much. But when I have all day to lay in bed and think about it, it becomes appealing.

Oh yeah, lastly, don't get too excited family. This is purely stream of consciousness writing.

A public service announcement

Also,

Here is a hilariously distasteful video that I think of often:

This is a segment from Don Hertzfeldt's "Rejected" series of cartoons.

Don't let this be you, see a doctor!

:)

I never write here anymore

It really is a shame I don't write here anymore. I'm not sure why. It just never occurs to me. It's not like I don't have a bunch of down time now and again!

But here I am, three months after the last post and life has continued moving along.

I had my regular PET/CT scan a few weeks ago. It was the final scan after six months of chemotherapy (FOLFIRI+Avastin). Unfortunately, it wasn't very good. It showed that there was another lymph node that is likely to be malignant and another lesion on my liver. While that isn't a "dramatic" progression, it's certainly not good given that I spent six months on chemo trying to keep it at bay. Thus, it was decided to move from Irinotecan to Oxaliplatin and see how that goes. The treatment is exactly the same as before but just with that one switch. This is course not good news on the whole as it represents (to me, at least) one more step towards the inevitable. I did however misspeak in a previous blog post. There are no issues with lifetime dosing limitations on Oxaliplatin. However, continued use generally leads to increasingly worse peripheral neuropathy and most people eventually have to stop taking it for some time until the symptoms subside.

I have had one treatment so far on this new regimen. On the whole, I think it is easier on me than the Irinotecan. I have always supposed to had sometimes severe diarrhea but have actually never had this problem (the opposite has occurred, in fact, thanks to the large doses of anti-nausea medication). Lately though my bowels have been all kinds of unhappy about five days after treatment. I did not have much of a physical feeling of exhaustion after the last treatment. One thing that Oxaliplatin definitely does do is a weird sort of peripheral neuropathy. It causes a very strange sensitivity and sensation to cold things on your hands and throat (presumably feet, too). It feels like little ice shards are digging into your hand if you touch anything cold within about five days of getting it. If you breath really cold air or drink something like a milkshake, it feels a bit like your throat is closing. I haven't yet had the sensation of feeling unable to breath completely, but I definitely see what they're talking about. It's only a feeling however, there is actually nothing wrong with you physically. I was surprised how fast this happened (immediately). Right now I think the side effect is gone, but it will generally accumulate to being worse for longer I gather.

One issue that I am needing to continue to sort out is my mental health. If I'm being honest with myself and others, I would have to admit I have some issues now and again with depression. I seem to get over it fast, but there are days where physically I feel fine but I just cannot bring myself to even get out of bed. This is clearly a problem. I'm not sure if I just "need to talk to someone" or if I just want some drugs to "make me happy". I suspect the latter. I've never been one to resolve anything by just talking about things since I feel that I already fully understand the situation. It's just not a particularly easy situation to deal with.

I mean, seriously, how is one supposed to take the situation? If you didn't find it depressing, you should probably be committed! I know every year probably tens of thousands of teenagers and 20-somethings die prematurely, which is of course sad. I suspect most of them die in a spectacularly unexpected and quick manner however. It's another thing to have this gradual slide towards it over the course of years. You don't really have to think about it if you're killed by a small airplane crashing into your house while you sleep, for instance. I don't really think about dying as the first thought in my mind. But it's always there, sort of like some low-grade ongoing back pain or something. I am definitely a bit bitter that this has happened to me and that I'm not going to be able to do many of the things that I wanted to in life. I'm also very upset that I'll be leaving behind a wife, a mother, and a grandmother. I'm not really expecting to live to be 30. I'll be happy if I do. I know that the statistics say that I have about an 8% chance (on average) of living five years beyond 25, which isn't very good. Thus far, things have gone pretty much according to average. So, yeah, I'm not really expecting any miracles.

One of the most agitating things to me personally is that I feel that I could have prevented this all from happening. The initial reason for the discovery of this latest disease was a constant low-grade back pain which felt exactly like what I had leading into Lymphoma. I've been told that there isn't a good medical reason for why having active cancer would cause a weird pain in my back/belly, but it's been a 100% predictor so far. The other concerning thing to me was blood in my stool. See, the thing is though, I had had this problem on-and-off since I was about 19. It was really bad when I was 19 too. It scared the be-Jesus about of me. But I never told anyone and never saw anyone about it. I just didn't want to talk to anyone about it nor did I want a slippery scope exploring the nether-regions of my bowels (I have since found that this is surprisingly not that uncomfortable). It eventually mostly just went away only to come back every once in a while for a short time. I think when I was 25 and diagnosed with this, it had been nearly two years since it had happened. I did mention it two or three times to my Oncologist in Gainesville during the lymphoma treatment. I remember he did say that I should probably get "scoped" but it just never happened. I didn't push the issue. I'm certain it was all one and the same. That little tumor in my colon probably started out as a polyp when I was 19. I never did anything about it until it was (much) too late. So yeah, I'm very upset with myself and I'm going to reap the punishment for it. If you're reading this and you've had/have blood in your stool: trust me, go see a gastroenterologist and don't let him/her brush you off as probably being OK because you're young.

Dealing with a disease like this (that is, an incurable, chronic, and nearly always terminal disease) as someone in the prime of their life is difficult. It would be one thing to be the average colorectal cancer sufferer: in my 60s+, retired, and probably with a litany of other health problems. It's another to still feel like you should be living a vibrant life, that there are wonderful thing still ahead for you, and the need to continue working. It is difficult to balance the needs of my personal life, my treatment, and work. My employer happens to be one of the best I could have possibly had in my situation. I've been given more than 1000 hours of paid leave so far for treatment. That's nuts, that's like half a year of work. I work as much as I can (which ends up being about 70% of full-time). I love my work and wish I could do more but alas I cannot. It also provides one of my few mental outlets, the ability to fully occupy myself for a long period of time. These amazing benefits are finite, however, and I have about 1000 hours left to go. Once I've expunged them, I'm not sure what I'll do. It's hard to complain really, but I will anyway. I don't think anything in the world is designed for someone like me: someone who can only be productive part of the time, unpredictably, and is on a slow path to expiration.

I would love to be able to travel and see other parts of this country (and indeed other countries). But it's so hard to do. I don't really have any personal time to speak of at work, so really any vacation would be unpaid for me. Emily's employer in general has been very flexible as well. She takes off every other Monday to go to chemo with me. That's 26 days a year right there. Any remaining days off we manage to scrape together are usually spent visiting or being visited by family. Then there is the need that what I do slot in with my treatment schedule. I can't really be gone for more than a week at a time and when I do go there are certain times that are better than other from a "feeling good" perspective. This is another unfortunate aspect of the situation we find ourselves in. But we've been here for a couple years now and are doing alright.

It seems increasingly likely that for the rest of my life I will be in an outpatient clinic receiving some form of treatment every other week. I would like to try Xeloda again in the hopes of not having to be connected to an infusion pump for 48 hours as well. I feel like this would improve my quality of life. But only if the side effects are not the same as the first time.

Nonetheless, I continue to generally be healthy and happy otherwise. I want to actually get out and do some cycling and other physical activity this year. Over the last two years my ambition and willpower to do such things has dwindled dramatically (other sign of some form of depression, I guess). After the last round of bad news earlier this year, I didn't get on my bike again. So hopefully I can rectify this in the coming year. I'll make the best of what time I do have left.

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.