Home chemo, aka Bag Week

Tomorrow I start what I hope will be my last long cycle of chemotherapy. (Of course, I thought the same thing last year, and look where that got me. But hey.)

And I realized that although I've now been through five of these cycles, and complained about the side effects, I haven't said much about the experience of home chemotherapy, aka Bag Week.

So here we go.

Early in June I had a port implanted (again). The procedure isn't too bad, because you're under light sedation, which gets you nice and means you don't particularly mind that someone is forcing a tube into your vein (though you're alert enough to observe that you would be more freaked out by the experience if you weren't so high).

There are two main advantages to having a port:
1) Easy access for drawing blood and giving IV drugs, rather than junkying up the arms
2) It allows for a constant, four-day-long dose of chemo at home. My first round last year, before I got the port, was as an inpatient because they don't like you wandering around outside with needles in your arms for that long.

When I go in tomorrow morning, I'll have a needle inserted in the port, and blood drawn. That blood will be tested to make sure my red and white cell counts are okay, and that I'm healthy enough for chemo. The needle will stay in until Saturday.

The insertion doesn't hurt much, and the nurse who usually does it is a nice guy who makes Shaun of the Dead references, so we get on well.

Here's how it looks:



After that, I meet with either my oncologist or nurse practitioner, and we talk about side effects, progress, treatment options, where to get great pizza in Inman Square, Nathan Myhrvold's Modernist Cuisine, etc etc.

And then I go up to the chemo unit, where my fabulous chemo nurse gives me anti-nausea medication, hooks me up to various bags of drugs, and organizes visits from the music therapist and integrative therapist. Meanwhile, we chat about everything from nail polish to home ownership to where to eat in Davis Square.

I get a cocktail of drugs that takes a few hours to drip through the IV into my bloodstream, and then sometime after lunch I'm hooked up to the take-home bag.

Inside the bag is a battery-operated pump (on the left below) and a bag of Fluorouracil, otherwise (and somewhat fittingly) known as 5-FU.



The pump is programmed to release 3ml of drug an hour. It makes a little whirring sound as it feeds the liquid through the tube and into the vein.

The bag isn't too heavy (and gets lighter as the week progresses). The main problem is really the hassle.

You know how some schools make kids carry an egg or a bag of flour for a week in an attempt to teach about the responsibility of having kids? It feels a lot like that. You can't go anywhere without the bag; it's almost umbilically attached to you.

Here I am, modeling the bag.



You have to be constantly aware of its existence and location, and whether the tube is likely to catch on the corner of a table or wrap around a door handle. Movements are pre-meditated: I'm going to reach for my coffee cup now, and the tube is below my hand, so it's okay. I'm going to keep my phone near my left hand, because it's on the opposite side to the tube, so I can grab it without worrying.

Bed time means setting up the bag on a side table, letting out an extra length of tubing, and arranging the sheets to avoid pulling on it during sleep. (And also piling books and cushions on the floor to prevent the cat from jumping on the bed and causing chaos).

Inevitably I need to get up in the night (I drink extra water during this week), which involves sleepily gathering up the tubing, shouldering the bag, and negotiating to the bathroom.

During the day, I spend a lot of time sitting in one place. I gather everything I need — laptop, tea, water, tissues, TV remote, book, snack — so I don't need to get up too much.

Damn, forgot my phone; have to get up again. Re-shoulder bag, check that tubing isn't caught, locate phone, sit back down, take off bag, check tubing.

And let's not even talk about the challenges of bathing while attached to an electrical gadget.

Maybe I'm too cautious about the whole thing, but I don't want to risk jerking the needle out of my chest. I heard about a female patient with a C-suite job who transferred her pump and drugs to a nice designer purse to disguise the fact that she was getting chemo, and my first thought was that's insane! What happens if she drops it?

(Not to mention that she'd either need to have a lot of tubing visible or sit in meetings with her purse on her lap, which says not so much "I'm a professional" as "I am waiting for a bus.")

As you can imagine, by the end of the week I'm antsy to get unhooked. If the bag goes on at 2pm on Tuesday, it will be empty at 2pm on Saturday, and by noon I'm bouncing around like a dog who's just realized his owner is holding a leash. Ohboyohboyohboy are we going to the hospital now? Pleasepleaseplease??

Once the needle is out, I feel like I've been uncaged. I can wave my arms around! I can multi-task! I can take a shower!

That lasts until I get back home, when fatigue takes over and I crawl into bed and stay there for the rest of the weekend. And then we go from Bag Week to Bad Week, when the mouth-ulcer side effects kick in and I'm sucking everything through a straw for the next five days.

Rinse, repeat.

Though with luck, this will be the last time through. Next stop: radiation. Again.

Back on the cancer train. Woo. Woo.

Wow, I've been incredibly lax about posting lately, haven't I? Well, I have a pretty good excuse: I'm playing the Cancer Card.

Yep, the Lump is back, and has taken residence in a jaw muscle that controls how well I can open my mouth (current status: not very much). After an MRI, PET, CT, and biopsy, the plan was to hit it with radiation.

And then my radiation oncologist decided the area that needed re-radiation was too great (it's considered risky to do radiation in the same spot twice), so now we're doing chemo first to melt it down to a more zappable size.

Which means I get to go back through the entirety of the same treatment as last year.

Which means that I get to have a chemo port fitted. Again. This afternoon.

To understand how little I want this, you'd have to understand how delighted and relieved I was to have the previous one removed last September. It makes me feel like I have an alien implant. I hated it.

But what can you do? The port means I'll be able to have induction chemo at home, which involves being hooked up to a bag of drugs attached to a pump that I carry around in a nifty shoulder purse for a few days. The alternative is a five-day inpatient stay. You may remember how I felt about the hospital food last time.

I've already had one quick shot of chemo. A few weeks back, we tried a different cocktail (more like a wine cooler: chemo lite) to see if it would have an effect. It didn't. Which is a shame, because the side effects were minimal, at least until this week when my hair started to fall out.

The stuff I'll be starting next (and by "next" I mean "tomorrow") will be either the same as last year or a variation on it. Worse side effects, but a better result.

Despite this very crappy news, I'm feeling pretty sanguine. Again, what can you do? Getting upset isn't going to make things better. And while I realize I'm employing selective memory here, I feel like there were good days last time around.

Yes, there were bad days, and painful days, and miserable days. But there were also days I got to be with friends, and days where I played music, and days where I laughed and watched movies and read books and felt like a normal person.

When we first started this whole process again, and were trying to wrap our heads around it, The Boy wondered whether this was like having a second child: The hard work of learning how to cope has been done, and this time we have a much better idea of what to expect. I like that approach.

So I'll be posting about going through this experience agian, but also about other stuff (I still have a million photos from our trip to Spain to post, and there's another insane three-hour meal to tell you about).

Hope you'll stay along for the ride!

Liquid lunch, but not the fun kind

So far I've been extremely lucky as far as chemo side effects are concerned. Apart from a short dizzy spell early in the week (for which I have happy little brown pills), everything has been fine.

Well, more or less.

Every day brings a slight change: On Monday I felt great, and ravenous, eating everything I could get my hands on (especially good cheese; need I remind you of the orange Americana served for breakfast in the hospital?).

Tuesday started out okay, but late in the afternoon it felt as though someone had snuck into my mouth with steel wool and started scrubbing.

That night, The Boy made a delicious-smelling stir-fry, but I could hardly bear to have anything touching my tongue.

Yeah, this is a thing that happens. Mucositis.

See, chemotherapy works by killing cells that grow and divide quickly, which includes cancer cells — but also many other types of fast-growing cells (which explains why hair loss is often a side effect). Among the fastest-dividing cells in the body are those in the mouth and throat, which makes sense: they're constantly being scraped away by food, so have to bounce back quickly.

You know when you drink, say, really hot soup, and you take the roof off your mouth? It feels like that, but (as I'm learning) it takes more than a day or so for the cells to recover.

And one of the main challenges is dryness. I'm now carrying a water bottle everywhere, and waking several times a night, painfully parched, to chug from it.

So what's a girl to eat?

At the beginning of treatment, my nurse practitioner recommended stocking up on Ensure Plus. We dutifully picked up a six-pack of Creamy Milk Chocolate flavor; my intention was that it would be for emergencies only. Because, really, have you seen the ingredients?



Here's what Wikipedia says about some of those ingredients:

Choline chloride "is mass produced and is an important additive in feed especially for chicken where it accelerates growth."

Sodium molybdate "is used in industry for corrosion inhibition ... It will explode on contact with molten magnesium. It will violently react with interhalogens (e.g., bromine pentafluoride; chlorine trifluoride). Its reaction with hot sodium, potassium or lithium is incandescent."

Potassium iodide "is a precursor to silver iodide (AgI) an important chemical in photography. KI is a component in some disinfectants and hair treatment chemicals."

Mmm. Something my body needs anyway.

But at this point, attempting to eat pretty much anything else was an ordeal. The leftover bean-and-kale soup that had been delicious on Monday night now felt like gravel, even after I whizzed it in the blender. Yogurt was better (especially frozen), but required some amount of tonguework, which I was not up to.

Okay, Ensure. You win.

But even in my debilitated state, I couldn't just chug it from the bottle. That is not how I roll. So I stepped it up.







Okay, it's not terrible. Sweeter than I would prefer, with an odd, chalky aftertaste; it's not something I would seek out for its taste sensation, but if you have to keep calories up somehow, there are worse things. Apparently it comes in other flavors, Strawberries & Cream and Butter Pecan (eww!) among them; I don't have an urge to experiment. Yet.

The worst of the discomfort lasted about two days; by Friday I was here:



(That's white and sweet pureed potato topped with Heinz baked beans and cheese)

And by Saturday lunch I was here:



(That's strawberry shortcake and tiramisu from Modern Pastry, thanks to Lovely Co-Worker Sarah).