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Round Six: Progress!

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!

Nifty!

My story “Two Kilograms and Counting” is the podcast this week at Every Day Fiction.

Please have a listen, and if you like it take a moment to review it, and tell your friends. If you don’t like it, please review it anyway, but you don’t have to tell your friends in that case.

Still going

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.

Not so bad?

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?

Pin loom

Ah. This fiber arts post showed up on the wrong blog (string goes here) because the WordPress app changed the way it organizes things. Sorry about that!

I’d like to show you the weaving I’ve spent the afternoon messing with but I can’t. Sorry.

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Round Three: Feeding the Beast

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.

IV iron sludge

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.

Defenders

It’s not all fun and games around here, I’ll have you know. Just yesterday we had to face the Serious Menace of tissues!

The stalwart assassin Cawti snuck up on the nearly-empty box in the bedroom, risking life and limb to beat the demon tissues into submission.

Cawti the defender

Trygvi, being more of a barbarian thug than a sneaky assassin, devoted his considerable talents to utterly destroying the brand new box of tissues in the living room.

the terrible aftermath

The octopus bears lonely witness to the destruction.

Friends

[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.

Round Two

And the winner is.. me!

But it was a bit harder fought this time. I pretty much slept for three days, and the cold sensitivity was worse. But the nausea meds continue to work, and I have the luxury of being able to sleep for three days when needed. Not only is work cooperative, my mother is here visiting, and she’s been cooking and doing the dishes. (So much appreciated!)

I was unhooked at noon yesterday, and am back at work today, though there may be a nap in my mid-afternoon future. Right now, the most annoying thing is that I can taste the chemo. Presumably it’s breakdown products, since it’s been over a day and I couldn’t taste it this much while actually on the pump, but EW UGH BLARGH. It makes eating and drinking enough that much harder, and is really just plain disgusting. There was a bit of post-chemo “flavor” last cycle, but I don’t remember it being this strong.

I had a brief moment of panic after getting my bloodwork results from Monday before starting chemo. My red and white blood cell counts are good: within normal ranges for people not on chemo, so excellent for those who are. There’s a blood marker for colon cancer, called CEA. At diagnosis, my level was high, what would be expected for someone with metastatic colon cancer.

On Monday, it was considerably higher. Wait, what!? But it turns out that the chemo regimen I’m on can produce initial spikes in CEA, and such a spike is likely a sign that the therapy is working: dying cancer cells are releasing CEA, which is also an inflammation marker. My oncologist was quick to reassure me of the same thing.

A bit more digging turned up additional information on CEA, including the points that it is too variable to be a good screening test, and not even a good monitoring tool. So I’ll try not to fuss about it.

Science: nifty but confusing! And this just reinforces the point I’ve already made: if you aren’t sure, ASK.

Something else I didn’t realize about cancer until I got here: how dreadfully dull most of it is. Sure, there are moments of panic, but mostly it’s sitting still for hours on end, napping ceaselessly, and putting up with myriad physical inconveniences large and small. It’s neither fun nor interesting, though I will have a whole PILE of sensory details for putting in science fiction. (MRIs as spaceship surrogates, the lingering taste of poison, and so on.)

Cyborg, redux

This is a good reminder, and just as applicable to writing or any other creative endeavor as it is to game design.

Need some visuals to go with 2kg? Photographer Alex Wild has just the thing, including photos of a fungus mentioned in the story. I told you I didn’t make this stuff up.

I don’t really want to talk about cancer today, but I know that many people who care about me are using this blog to check in so I will give you a brief update. I feel good this week: the cold sensitivity has worn off, my energy levels are good, I shoveled whole piles of fluffy snow (we got 9 inches at my house), and I’ve been sciencing hard. Chemo Monday, but for now life is fine.

And, for the curious, and because I think it’s both kind of neat and very sciency, I’ll include a photo of my mostly-healed cyborg apparatus. The cyborg parts are working well, though my superpowers have failed to materialize (unless you count punning and botanical pedandry, both of which have been more apparent than normal on twitter lately). For the squeamish, I’ll put in some blank space first.

La

La

La

La

La

La

La

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Ready?

One…

Two…

Three.

port

It sticks out more than I expected, because it’s in a low-fat and low-muscle area, and that style of port is pretty big. I also didn’t expect the tubing to be so prominent. But it works beautifully, and that’s the important bit. Too bad the stylish purple carapace doesn’t show. Up close, there are three little bumps apparent that help the nurse figure out where to put the needle. It hurts less than getting an IV, and is a whole lot less inconvenient than having all those bits dangling from your arm.