Heuristic

I promised you Friday’s post yesterday, but you get it today. It isn’t that exciting anyway, just a cautionary tale.

I have menstrual anemia, and have for years and years. Nothing physically wrong with me, just heavy periods and associated monthly anemia. (Look, I’m blogging about colon cancer, bowels, all sorts of usually undiscussed innards. Bodies are weird, stupid, gross, and everybody’s got one.) So I’ve been taking oral iron for years, and that largely takes care of it, except for a bit of extra tiredness for a couple days a month. But oral iron can cause digestive problems, so my oncologist wanted me to stop.

Side note: My oncologist is very smart, but I don’t think he deals with many youngish women, because it took me a long time to convince him that yes, my blood levels were fine because I’ve been taking iron supplements, not because they were naturally fine. But we’ve got it figured out now, after some discussion and a new blood test. Minor moral: advocate for yourself: nobody else knows your body as well as you do.

Instead of oral iron, there’s an IV option that skips the digestive system entirely. He wanted to get the first dose into me as soon as possible after deciding I needed it. I got a call Friday morning at work: “Could you come down to the office so we can give you some IV iron?”

“Sure, what time?”

“How about 10:30?”

Perfect. I can get it over with, and get back to work.

The astute among you will already see my mistake.

I grab a science periodical and head out the door. They get me in pretty fast, settled in the infusion center. “Okay, this will drip in over ninety minutes.” Aw crap. I though this was going to be fast. I didn’t even bring my ipad. Or snacks! (IV iron is an ugly brown liquid, which will surprise nobody who’s familiar with iron chemistry.) Future doses will be in with my chemo, so I won’t need to make extra trips.

I didn’t get hooked up until 11, so I was starving by the time I got done. Worst of all, I was still uncaffeinated! So, Gentle Reader, always ask how long it will take. Always.

Today’s procedure was as fine as it can get. My bloodwork was within normal levels, at what should be the low point of the chemo cycle, which is a really good sign. My immune system is still doing its job, and so is everything else. (Except the cancer cells: DIE DIE DIE DIE DIE! Freeloading useless bastards.)

The only bad thing today was that the bloodwork was scheduled for 8am, and the endoscopy not until 11. I ended up taking a nap in the waiting room. The nurses were very apologetic, but it’s just the kind of thing that happens when trying to juggle complex schedules at the last minute. They got me in as soon as they could, but it was still a long morning. The ultrasound got good images of what they wanted to see, and did not find any new surprises. I’m good with no surprises. Really.

I have a fabulous medical team, and they’ve been very good about getting me in to talk to all the relevant experts. But every time you talk to a medical expert, they want just one more test.

Which is how I won the “two colonoscopies in three weeks” lottery. This time, an endoscopic ultrasound.

I am SO NOT AMUSED. I want the experts to have good data, but I don’t want to be a science experiment all the time, especially not a cranky, unfed, full-of-laxatives science experiment. Every time I think they’ve finally run out of tests, they come up with something else, and it’s usually disgusting, undignified, and involves not eating.

Speaking of which, this is the first time ever I’ve had to think about not eating enough. My appetite was good throughout chemo, and the anti-nausea drugs were 100% effective the entire time, but my general digestive system is not enthusiastic about the world right now, and it’s making a lot of things sound unappealing. I’ve been eating a lot of toast, and that’s really not a balanced diet. I’ve also been very tired, and that hasn’t improved my ability to feed myself correctly. Nick’s back has been bad this week too, so less cooking support than usual.

I’ve tried harder today. Breakfast was oatmeal with dried fruit, walnuts, flaxseed meal and protein powder, and I’ve had several small meals since then, which seems to work better. (This blog won’t turn into a meal-by-meal replay, I promise, but there may be some benefit in at least acknowledging this as a problem and talking about how I’m working on it, or not.)

I was disconnected from the pump on Wednesday, and went to the office Thursday and Friday. Contrary to what you all seem to think, I’m being very careful about not overextending myself: both days I came home mid-afternoon to take a nap. Yesterday was particularly bad: by 4pm I was achy, exhausted and freezing, but a whole lot of sleep and a warm boxer straightened that out. That’s why there was no blog post; yesterday’s blog post will be tomorrow. (This one is still today’s.)

Today’s been a low-key day: laundry and cleaning the cat box have been the most useful things so far. We have a couple errands to run, and I don’t think there’s a single clean bowl in the kitchen, but I’m not planning anything too exciting for the rest of the day. And then tomorrow I get to do colonoscopy prep AGAIN.

Speaking of boxers (and, well, trying to not end this post with laxatives), the kittens tell me there has been FAR TOO MUCH BOXER around here lately (here including twitter and Facebook).

That was this morning; they are looking up at the camera directly overhead. I was reading in bed, but otherwise couldn’t move at all. Fortunately there was a noise outside that required the services of the Feline Investigation Squad, or I might still be there.

Monday morning bright and early the chemo nurse hooked my cyborg implant up to an array of machines with blinking lights via sets of tubing with all sorts of access ports.

She let them pump me full of careful doses of poison for four hours, then sent me home to await the delivery of another blinking machine with its own packet of poison, and another nurse to administer it.

That part would have gone much more smoothly if the delivery driver hadn’t been told 5pm, while I and the nurse were told 2:30.

Odd as it sounds, I felt better leaving the infusion center than I did going in: the week of antibiotics following the port surgery had left my guts a bit unsettled, and the IV antinausea meds cleared that right up. I’ve been diligent in taking the pill versions, and haven’t had any trouble at all.

By the time everything got straightened out and connected on Monday, I felt like I’d been run over by a herd of wildebeast, but that faded, and I even left the house for a couple hours on Tuesday, pump and all, to make an appearance at a conference.

I was unhooked this afternoon after my 46-hour extended dose, and feel not-too-bad. I shoveled some of the snow, in very short doses. My endurance is definitely subpar, but a bit at a time with lots of breaks went okay. And maybe an afternoon nap to smooth it out a bit.

The cold sensitivity, though, that’s something special. Almost immediately after getting the oxaliplaten Monday morning it hit. I can’t drink tap water, let alone ice water, wash my hands in cold water, or rummage for things in the refrigerator, without frostbite prickles or worse. It doesn’t hurt, exactly, but I feel like I’m swallowing shards of ice. So I’m microwaving my tap water, and even my yogurt. This should fade over the next few days, I think.

I know that side effects sometimes don’t appear for a few days after chemo, and that the intensity can increase after multiple doses, but that’s not a horrible place to start.

The ultrasound test scheduled for today was moved to Monday, for various reasons including a whole lot of snow, and the Monday after that is my next round of chemo. Cyborg science experiment, that’s me.

Chemo starts tomorrow.

I want to get going on this: I want the Wurst and the Primordial Wurst gone, and chemo is the first step towards that.

But at the same time, I’m completely intimidated, scared even. Right now, I’m a person who feels healthy but is actually sick. Tomorrow I become a person who is sick. I’m not sure I can explain how that feels, writer or not: there’s an actual dividing line in my life between healthy and sick, and it occurs at 8am tomorrow. Never mind that the symptoms will be caused by the treatment rather than the disease; that’s the line.

Still, onward. That’s the only way to go.

At least I have excellent support.

The port is healing well, I think: itchy, but only hurts when I turn or stretch too far. I got out yesterday afternoon for a 2-mile walk, and hope to manage that again today. It’s supposed to be above freezing! I worked a full day yesterday, and am doing the same today. Cherish the normal days while I have them, before I settle in to whatever the new normal will be.

Despite a minor mix-up with prescriptions (If you aren’t sure about something, ask!), I’ll be starting chemo on Monday. I spend some time at the infusion center Monday morning, then a home nurse hooks my port up for a 46-hour drip. I had the long phone call with the chemo nurse yesterday to talk about the port hook-up and all the things that could go wrong (side effects! allergic reactions! chemo spills! toxic bodily fluids! when to call 911!). I know it’s the equivalent of the fine print on the drug inserts, but it’s still rather scary.

The common side effects are nausea, diarrhea, cold sensitivity, and tingling or numbness in the fingers and toes. The first two are generally treatable with other drugs as long as you stay ahead of them (drugs first, and as prescribed; no waiting or messing around). Now is a great time to have cold sensitivity, and there’s not much to do about that except dress warmly and stay indoors. The fingers/toes? Could interfere with my planned knitting, but at least there’s plenty more Doctor Who to watch. I may not even lose my hair on this one.

Still, scary. I’ve felt fine so far, except for discomforts due to the necessities of the various diagnostic testing. I know that will end Monday, and that the treatment will make me far sicker than the disease has so far. I know it’s necessary, and I’m eager to get started, but oh how I don’t want to.

And then there are Things. Things Without Arms and Without Legs, that is. Some of my friends have been talking to me, some have been sending me cards and goodies, and some of my friends got together and sent me art. The artist, Liz Argall, asked if it could be posted publicly, and I said yes. So now I can share with you, Things talking to me. (Thank you to Fran Wilde, Kelly Lagor, Elizabeth Bear and A.C. Wise! [The ‘Spanish Inquisition’ was from a snarky remark I made while discussing my diagnosis, if you’re curious.])

I have this printed out where I can see it frequently, and it will help me through some of the rough times ahead. Along with the chocolate, and the tea, and the other good wishes. Support is good, whatever form it takes. Thank you all.

The port implantation went very smoothly, and I’m home, fed, hydrated, and equipped with Percocet and antibiotics. Wonderful friend played taxi driver: thank you!

The new recliner arrived before I got back, and I can safely report that it is just as comfortable as it was in the store, and that there is plenty of room for the boxer.

I hate to disappoint you all, but the purple port? Is entirely buried under my skin. The whole point of having a port installed is that nothing sticks out, and that it’s easier to give IV drugs without wrecking my veins with repeated sticks. It doesn’t come in colors, and I can’t accessorize to match it, even if my fuzzy bathrobe is pretty much the same color.

I’m not allowed to do much of anything today, or lift over twenty pounds for a week, and I have a week of antibiotics just to make sure all heals cleanly. As already mentioned, I have Percocet too. But last time I had minor surgery, I used almost none, so I only filled half the prescription. Before I took one, I was uncomfortable but not really in pain. The incision site, of course, and turning my head is problematic. Not only will I not be walking the boxer for a week, I also won’t be doing any yoga. (Cranky about both! Maybe careful gentle yoga in a few days.)

It’s very cold here, and really not a bad day to huddle under a blanket and watch Doctor Who. I’ll probably work from home tomorrow so I don’t have to go out in the cold. If I’m still taking Percocet, I’m definitely working at home, or not working. (I have some reasonably brainless computer tasks lined up.)

My wonderful UCF friends sent me a gift basket. Chocolate is just full of antioxidants, you know. Very therapeutic. Though another friend told me that if I’d wanted a basket of goodies, she would have been happy to send me one without messing around with all this cancer stuff.

I am so well-endowed with people who love me and wish me well. That means a lot.

And now, Doctor Who. And maybe one of those cookies…

I feel lovely today. I got enough sleep, I did yoga, I walked the dog before the temperature dropped again, my digestion has recovered from all the tests that involved eating/not eating/drinking inedible substances, we had a lovely dinner with friends last night, the sun is out, and so on.

And the comments I’ve been getting here and privately: you all make me feel loved and appreciated. I’m so well equipped with friends, even if so many of you are so far away. There’s just no way I can answer all of you individually, though: I wish I could, but I don’t want to make promises I can’t keep. Please don’t take it personally, and please keep leaving comments as you feel motivated.

Tomorrow I become a cyborg: I get a port implanted. Not just any old port, but a PowerPort! Cool names are very important when planning your cyborg-superhero combo pack.

(Image shamelessly stolen from the manufacturer.)

The surgical consult last week was excellent: they had a demo port and pump to show me what it looked like and how it worked, the surgeon explained all the potential side effects and how he did the procedure, and so on. I know that kind of meeting is what’s supposed to happen; it’s nice to discover that it actually does. This one was especially impressive because my oncologist set it up with the surgeon while I was there, so I wouldn’t have to come back later.

Anyway, 8:30 tomorrow, my cyborgification begins! And then my recliner is delivered!!

Steve Buchheit asked yesterday in comments about my prognosis.

Here’s the thing: I. Don’t. Care.

Any numbers are population means. They are valid in the aggregate, more or less, but have little or nothing to do with my my life. Unless somehow there are stats on healthy 43-year-old women who walk all the time, eat well, and have my particular combination of primary and metastatic tumors?

Yeah, I didn’t think so.

There are five-year survival numbers, but fuck them. That’s all patients, all causes of mortality, and they don’t tell me anything useful, except that not everyone dies in that timespan.

My odds of dying today are about the same as yours, possibly less if you have more urgent health problems.

My odds of dying this week are about the same as yours, too, given the same constraints.

Sure, my odds of eventually dying of colon cancer are a whole lot higher than yours, but that doesn’t say anything about “will” or “when.” Even my odds of dying in the next five years are considerably higher, but that’s probability, not certainty. And of course, when you get right down to it, we all have 100% probability of dying eventually.

I don’t have a prognosis, I have a plan. The medical part of the plan involves probably four rounds of chemo, then more scans to assess my response. At that point there will be more major decisions about surgery or more chemo, but I’m very pleased to have a way to move forward immediately. (And to have been allowed to make that decision myself after being presented with the various options.)

The personal part of the plan involves living each day as healthily and happily as I can. The tools have changed, but that’s no different than what I’ve always tried to do, what anyone tries to do. I’m not being Pollyannaish, nor am I being stupid: I have a will, I have various plans in place or underway. I could die, and I’m planning for it, but I’m also planning to live a long and happy life. (Nor, incidentally, is this bravado: I’m utterly serious.)

Coincidentally, an essay in the New York Times yesterday says much the same thing, with the wonderful added point that five-year statistics are always at least five years out of date.

Fuck cancer. Fuck the odds. I have things to do.