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.
