Monday, July 23, 2012

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.

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Blogger Michael Buller said...

Good luck Carolyn! Thinking of you here at Overland Street.
ps - Love the 5-FU part!

8:37 AM  
Blogger Bex said...

Hi Carolyn
My name is Bex. I also hail from across the pond. I was in touch with Saul Wisnia (sp?) the other day and I was telling him all about my story for an article he is writing and he mentioned I should subscribe to you. Not being technically minded, it took me some time to work out how to post here. But, ta da! I have managed it.

I have also recently been a cancer patient at Dana Farber (and lets be honest here - when does one ever actually STOP being a patient when diagnosed with cancer?) and identify with both your experiences and with your sense of humour. You writing was simultaneously brutally honest and hilarious!

Anyway, I was just saying hi really...
All the best

7:50 AM  
Blogger Mumbles said...

5-FU--I recognized the name immediately, it's one of the drugs of choice for my skin cancer, though I've opted to go for excision instead. And yes, the name is absolutely fitting.

Kris, who can't figure out how to subscribe to you because I get a page full of wonked up code when I try. S'okay, I bookmarked you.

9:15 AM  

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