Fuck Cancer

After the recent rounds of tests, I’m waiting on a surgical consult again. It’s possible they may recommend chemo+radiation, which would be a continuous low dose of 5-FU (part of my current regime), to further shrink my tumors prior to surgery. Since surgery is sounding likely, my oncologist decided to take me off the oxaliplatin this time, since that’s the liver-harming component of this poison cocktail. If I’m likely to have liver surgery, we need to start with it as healthy as possible. I still got the full dose of 5-FU this time, and am on the pump for another hour. My appointment with the surgeon is at the end of the month, right before my next round of chemo is scheduled.

The 5-FU only dose is much less exhausting than the full FOLFOX treatment. I’m getting more work done, and napping less. Even my food problems are reduced. (I had a whole bagel for breakfast!) Best of all, the oxaliplatin is the one that causes the cold sensitivity: I can drink tap water! And eat ice cream! (Well, I don’t actually want ice cream just now, but in a couple days I probably will, and I’ll actually be able to eat it.)

So it looks like, having settled into a routine, it’s time to break it. I don’t want radiation or surgery, of course, but I want this shit OUT OF MY BODY, even if it originated from my body. Surgery to reduce the tumor load will make chemo more effective, and the radiation will kill off more cells. DIE DIE DIE!

And they are: over the past month my CEA has dropped from 871 to 270. The chemo is working well, and adding in the other technologies will work even better. Science! Science works.

I realize that I never blogged about chemo round 7, and here it’s only a couple days until round 8. It was… unexceptional. I felt lousy, I slept a lot, I felt better. My platelets were up and my liver was better, so no issues with getting the treatment. I expect that a round with lower dosage helped both. I didn’t really want to think or talk about it; I can go whole minutes without thinking about cancer sometimes, and, well. Sometimes not paying attention for a while is the way to go.

I had an MRI last week, and it confirmed the shrinkage seen in the CT scan: primary tumor half the length it originally was (so much reduced in volume. So that’s good. All of the scans have been sent to the surgeon, and I’m just waiting on her and the tumor board to decide what happens to me next.

I have a whole pile of links and other things, but I’ll save those for a non-cancer post so the good and the bad don’t get shuffled together.

CT scan results this morning. I’ve now read them, and my oncologist’s notes, four or five times, both before and after coffee.

Everything we knew was cancer has shrunk, especially the liver Wurst. “… reduced in size or nearly completely resolved.”

I haven’t mentioned it here, but my first CT scan found a couple of spots on my lungs, of the sort that would be utterly unremarkable if I didn’t already have cancer, but since I did could be suspicious but were too small to tell, and difficult or impossible to biopsy.

The approach to those was “wait and see” – if the chemo was effective on the known tumors but those spots didn’t shrink, then they were not cancer. I didn’t mention them publicly because there’s absolutely no sense in fussing about a maybe, especially when there were so many legitimate causes for fussing.

They haven’t changed. In oncologist-speak, “Overall reduction of the previously noted metastatic disease involving the liver noted, stable lung nodules.” Thus, not cancer.

I like the CT report’s phrasing of “nearly completely resolved” better, but that’s not too bad either.

So, incredibly good news as I read it, but as always pending further interpretation by experts.

tl;dr: FUCK YEAH!

I had the food issues worked out, having managed to not lose any weight overall for the past month, despite weekly cycling depending on whether it was a chemo week or not. Not interested in food from Monday afternoon on during the chemo infusion, but not nauseated as long as I took my drugs. Don’t need the drugs after Wednesday night, but the chemo made food taste nasty, mostly just on Thursday and Friday. Appetite and taste returning to normal by Friday evening, except for persistent numbing of tastebuds. Then eat whatever I wanted for the next week, making sure to include lots of good fats like avocado and almond.

It was all slightly variable: how bad things tasted on Thursday, how fast my appetite declined or returned, and such, but that was the basic pattern. It took me a couple rounds of losing weight to figure out how much to eat the second week, but by chemo rounds 4 and 5 I had it mastered.

So of course round 6 had to be different, and nothing is ever different in a good way. This time the poison taste wasn’t too bad, but I didn’t start to regain any interest in food until the next Tuesday, over a week after starting chemo, even though I received a lower dose of the major chemo drug. Today I’m mostly but not entirely over it (the rest is quite possibly the barium after-effects). Sadly, this meant that I cooked a lovely Easter dinner that I didn’t want to eat. I ate some, food being a necessity even if unappealing, but couldn’t eat very much. Part of the lack of foodliness, as I’ve been calling it, is that not only do I not want to eat, I physically can’t eat very much at a time. I haven’t been on a scale, but I suspect I’ve lost a few of the pounds I worked to regain. (Not a worrisome number, I hasten to add, but still frustrating.)

On the other hand, it’s finally getting warm enough that I can spend some time outside. SO HAPPY to be able to start walking again. Not today, though: cold and windy. But it’s getting better.

And while I’m talking about food, don’t let anyone tell you there’s a clear link between cancer and anything: it’s inordinately complicated. Overall healthy is good; beyond that, even the experts don’t know.

I had a CT scan this morning. If they want to look at your digestive system, they send you home with a couple of bottles of barium. The first is to be consumed before bed the night before. The first third of the bottle isn’t bad at all. It’s kind of thick and chalky, but they make some effort to flavor it.

It gets harder and harder, though, and by the end of a full 450ml bottle of barium sulfate, it’s rather hard to take that one last sip.

Then there’s more barium for breakfast, and a last slug right before the scan.

The CT scan itself is easy and quick: I had an 8:30 appointment, and was back in my car at 8:48. They give you an IV contrast as well, to highlight the vascular network as well as the digestive system outlined in barium sulfate. The radiologist is always very careful to warn you that the IV contrast will make you feel warm, and like you peed your pants, but you didn’t really. No idea if that’s the same for men.

Now it’s just the waiting. And, well, the getting rid of all the barium I drank. Did I mention white and chalky?

Meanwhile, I’m now having coffee with toasted and buttered hot cross buns. That tastes a whole lot better.

I’d mentioned before that my CEA levels went up when I started chemo, but didn’t really explain. On the scale my lab uses, over 2000 is an indicator of metastatic disease (I think; I’m not quite clear on what they’re reporting). My initial level was 2194, meaning I had metastatic colon cancer (regardless of the right threshold level, that’s really high). Yeah, I already knew that by the time they did the blood test, but it’s also an indicator of treatment efficacy.

I also mentioned here that I was briefly panicked when my CEA went up to 3987 after the first round of chemo, but both my oncologist and my own research reassured me that this was common, and believed to be due to the chemo killing cancer cells. CEA is an inflammation marker, and cell death releases a lot of it. I trusted this information, and didn’t fuss about it too much.

I’m getting CEA done every month, so that high number was just before Round 2. The Round 4 number was a bit lower, down to 3106. Still way into “evidence of metastatic disease territory,” but a bit improved.

But as I go into Round 6? It’s down to 871. FUCK YEAH! This poison shit is working!

I have a CT scan scheduled for a week from tomorrow (yay oral barium goop), but I’m hoping it confirms this good news.

I technically should have failed my blood tests today. My liver function is a bit better, and while not great still manageable. But my platelets were at 95,000, and if they’re below 100,000 the official guidelines say to wait a week. But my oncologist is fairly aggressive, and I’m younger and healthier than the representative colon cancer patient, so we went ahead with chemo, but with a slightly reduced dosage of the aptly-named FU. I just have to be careful about cuts and bruises (and yeah, the boxer bruises I’ve already accumulated are rather spectacular).

I was hoping to get a break around scan time, but I’ve already been scheduled for the next two rounds, continuing the every-two-week plan. If my platelets stay low, I probably will end up putting that off by a week.

Other than that, I feel kind of lousy today, queasier than usual, and the cold sensitivity is at least as annoying as ever. But it was a good weekend, with weather warm enough that I could go out without pain or tingling in my fingers and nose, and the throat sensitivity reduced enough that I could eat ice cream for a couple days. And I went kayaking! Just have to get through the next couple of days, then I’ll start to feel better again by Friday.

And with a 357% drop in CEA to motivate me? Die, cancer, DIE DIE DIE DIE DIE!

I didn’t report on chemo round four, two weeks ago, because it was starting to feel like complaining about the weather. I feel lousy/it’s still snowing: unpleasant to live through, and uninteresting to hear about.

The exact details vary, but the overall pattern is pretty similar: I feel lousy for the three days of chemo, can work on Thursday but everything tastes nasty, start to feel better by Friday, and the second week is really quite normal.

Even though I felt quite good last week, I nearly washed out of chemo this week due to high levels of liver enzymes. They were high last time, and if they didn’t come down this time I’d have to wait a week. But they did come down, though they’re still high, so I’m hooked up to the pump even as I write this.

I’m not being poisoned yet, just waiting for the chemo to get mixed and delivered. I’m not getting pondwater today (IV iron), so I’ll be here less time, except for the delays for the full bloodwork and getting the chemo.

Last round I had the biweekly oncologist meeting. We decided on two more rounds of chemo (today and one more), for a total of six, before a break for scans. That will put them sometime in late April, I guess. I’ll report back when I know more.

My CEA level also came down last time, from the previous test two weeks before that. It’s still very high, but dropping is a good sign.

So, you know, a lot of waiting, a lot of uncertainty, a lot of things I don’t know or won’t know. I’m doing all the things, however unpleasant, because it beats the alternative, but it isn’t much fun at all.

Back at the dawn of time, or a couple months ago, the thing that prompted the flurry of medical tests resulting in my cancer diagnosis was that I could feel something odd internally while doing yoga, specifically when lying face-down on the floor. That something turned out to be a tumor on my liver, the Wurst. Ew. Ick. Ugh.

I modified my yoga routine to avoid that position.

This morning I added it back in, largely to encourage the cat standing on my back to disembark before I did something that might encourage inserting claws to maintain stability.

I couldn’t feel the Wurst.

This is purely subjective, and could mean absolutely nothing. I have a bit of medically-induced PTSD already, after several rounds of “that’s nothing,” followed by, “oh wait, that’s really horrible.” It makes me terribly reluctant to accept anything potentially good as potentially good. And I can tell you my next CT scan is going to be utterly terrifying.

But still… yay?

I think I’ve settled into a routine here. I’m all cyborged up for the next 46 hours, have work to do at home, naps to take, tasty things to eat. The cold sensitivity is getting progressively worse, as expected, but otherwise I feel not-so-bad.

I even got a photo of the brown sludge (IV iron, called Venofer). Isn’t it lovely? Better yet, I can taste it while it’s being infused, like a mouthful of nails.

Just because I’m bored with chemo already doesn’t mean I need to bore you (unduly), so instead I’m going to offer up a public service announcement. Sometimes the very best thing you can do is STOP TALKING. Here’s one of those times. (Weight issues, in case you want to stop reading now.)

So then, a true story with a definite moral…

Setting: Office breakroom. I’m heating my 48th snack of the day, even though everything tastes like poison.

Enter female coworker.

C: You’ve lost weight, you look great.

Me: Thank you. (continuing to focus on what I’m doing)

C: Have you been working hard at it? I have a friend who started running, and that’s really worked for her, but it’s so hard to find something that you like and can stick with. But whatever you’ve been doing yammer yammer yammer.

Me: (sighs) Before you end up terribly embarrassed, it’s the chemotherapy.

C: But you look so healthy! You really look good yammer yammer.

Me: (walks out)

Coworker, that’s the point where you STOP TALKING.

I mused snarkily later as to whether I should shave my head so I looked like a proper cancer patient. (My hair is thinning a bit, and I may cut it short, but I don’t expect to lose it all.)

A friend sent me a relevant cartoon.

I actually managed to gain a little bit of weight since last infusion, by trying really hard to eat the energy-densest things in sight. And donuts too, but hey. These things happen. It’s utterly foreign to me, this approach to food. I think it must be like what a serious athlete does, trying to balance energy and nutrients and protein to fuel intense workouts. I’ve always been too lazy for that kind of athleticism, preferring yoga and lots of walking. And even though I can’t do much of the latter (or always much of the former), I’m fueling the chemo and related metabolic processes.

During chemo I’ve been tired and not that interested in food, and for a day or so after I’m off the pump everything tastes of poison. Not so much while I’m on it, so I’m guessing it’s chemo breakdown products. A bit of lemon juice in my water glass helps, as do citrus candies; thank you to those who suggested that. (It’s much worse than the nail flavor from the iron, and that’s pretty much gone already anyway.)

Left entirely to my own devices, I’d be eating a lot of toast. Even buttered that’s not calorie-dense, and rather lacking in vitamins and protein. So I’ve been trying harder, and eating things like full-fat yogurt, oatmeal with dried fruit and protein powder, vegetable soup, pudding. And because of the cold sensitivity, everything has to be warm, even the yogurt. Almond butter, nuts, avocados, stuff like that. Fruit and veggies too. I wish I could make smoothies, but they’re too cold. (Tap water is too cold.) Anyone have a warm substitute for smoothies?

I’m trying to focus on protein and unsaturated fat, but not fussing at all about saturated fat or anything like that. Successful cancer treatment is an enormously higher priority right now than cholesterol levels. We made bread pudding with dried fruit, and that was awesome: starchy comfort food with protein (eggs) and fruit. Ditto sugar, though I’m trying to keep that to reasonable levels despite the donuts. (Before anyone comments, read this. I have no patience for cancer-related nonscience.)

After losing a pound or so a week for the first few weeks on chemo, I’m pleased to have reversed that trend, even though I feel like I’m eating ALL THE TIME. My digestive system is happier with frequent smaller meals, compounding the feeling that I’m always eating. The anti-nausea drugs continue to do their thing. As long as I pay attention, I should be able to keep my weight and nutrition in line.

[This was written in response to a friend’s blog post, and originally left there as a comment. I will leave it to Friend to decide whether to link the original in a comment. Here is Micah’s original post.]

You can feel bad, while still recognizing that someone else feels worse. That’s okay.

You can be sympathetic, and wish you could do something, even when you can’t.

If you’re geographically nearby, and you offer to help, do the best you can to offer concrete things, rather than just “anything I can do.” Say, I will drive you to chemo next week, or I will make and freeze a casserole so you have something to eat that doesn’t require work (but ask what they can eat!), or loan them a stack of fun books or DVDs.

Someone newly diagnosed with cancer is swamped with generic “Anything I can do” but may still be at a loss for specifics.

And sometimes there isn’t anything you can do.

It does truly make a difference to know that other people notice. Moral support is still support, and it matters. Yes, even at the same time as there’s a glib “had this conversation five thousand times” veneer, it still matters.

Cancer is overwhelming, and all-encompassing. It’s all you do and think about for a while, and then you settle into the new routine of treatment, recovery from treatment, knowledge that your body has rebelled and is trying to kill you, if without intent or malice. Cancer instantly changes many of the things that form your self-identity, from “healthy” and “active” to more subtle things, like “reads a lot of fiction” or “writes on weekends.” Because you can’t always, and it’s soul-crushing far beyond the obvious.

And you’re right, you don’t know how that feels (and I’m happy for that), and you can’t help. And if you ask casually, you’ll probably hear “pretty good,” for whatever the current definition is. (Which may be: not dead and the anti-nausea meds are working, or it may be more or less than that.)

But if you ask again, you may hear more. And you still won’t be able to do anything except listen, but that’s better than turning away.

Be honest, look, speak, write. Don’t turn away. Fear thrives in secrecy and silence, the kind of fear that destroys people all on its own. Fight it in any way you can.