April 20, 2008

I was talking to one of my neighbours this evening—I haven't seen her in, what, five months?—and she said that it must be nice to be home and getting back into my old routines. Which I thought was funny, because I'd already decided that today I was going to write about one of my favourite routines that's changed since my diagnosis, and will stay changed for quite some time.

I love being covered in water. Invigorating showers that stimulate the senses, languorous baths with a glass of rum and Miles Davis on the stereo, laps in the pool—except for being rained on, being submerged is one of my favourite experiences, and one I'm happy to enjoy every day. You can tune a shower to your mood, say, with a quick, warm shower to clear the cobwebs in the morning with a short burst of cold water at the end for an invigorating snap when you've got a full day ahead, or a cool stream after a long bike ride. Since I work at home I usually shower in the afternoon to re-energize myself and think through things without any distractions. (In fact, it was during just such a shower that I conceived of Frames Per Second and had my first encounter with tachycardia.)

I'm kind of fixated on showers right now because the whole experience has changed for me. One of the last "normal" showers I had was at around 5:00 a.m. on December 17, 2007. That was when I was so cold that even two quilts, a huge cup of tea, a hot water bag, and Vicky and Max's huddled bodies couldn't get me to stop shivering for a half an hour. I got into the shower, made it as hot as I could stand it, and stayed in there until I felt I was warm enough to put on three layers of clothing and get to emergency at the nearest hospital. What I didn't know was that (a) about 36 hours later I would be diagnosed with leukemia, and (b) I would have two more showers in the next few days, and then I wouldn't shower again for almost a month—and that the act of showering would be very different.

When I was admitted for treatment, one of the first things the nurses did was stick a bunch of IVs in my arm. These were to administer my chemotherapy drugs and to keep me hydrated. A few days later a doctor installed a venous chest catheter in my right pecs—a pair of tubes (or "lines") that enters my chest a few inches above my nipple, proceeds up to my clavicle, and then goes into a vein leading straight to my heart. The lines that dangle outside—they extend about ten inches—make it easy to give me medication or draw blood without poking me with a needle. The tradeoff in convenience is extra caution. I mean, there's a hole in my chest. That means I have to be extra-careful not to get it infected, and that includes not getting it wet. (It's not like the entry point is exposed; it's actually covered by a plastic dressing about four inches square. But if that gets wet, it'll peel.)

So a quick dip in the pool is right out. So is a hot bath. And showering now requires planning.

In hospital, I couldn't just shower whenever I wanted to. Because no one wants any kind of diseases transmitted, the shower (there are two in the ward I was in) has to be cleaned first, so I had to wait until housekeeping could get to it after I asked—and this was assuming I wasn't neutropenic (when they didn't want me showering even if it was clean, just in case). Then, depending on what I was being administered through the IV, I had to wait until the dose ended. Then a nurse had to disconnect me from the pump, flush any lines that were being used with saline and heperin and clamp them off. Then it was time to protect the catheter by taping a plastic blood bag to my chest with medical tape as a splash guard.

Even then, I couldn't just shower freely. Normal movements (like, say, soaping) cause the skin to shift, and the tape eventually starts to wrinkle and come loose. Besides, medical tape isn't exactly waterproof. So showering meant being careful not to get the right part of my chest wet, even when washing my hair (or, more accurately, my scalp). After the shower I'd take off the blood bag, check to make sure I didn't get the dressing wet, and then eventually I'd be reattached to the pump.

The chest catheter is still in my chest, even though I'm home. I'll still need it for my regular blood tests and forthcoming transfusions. If I'm readmitted for chemo as I was twice before, it'll still be needed. It can also be used for the bone marrow transplant. That means that for at least, oh, let's say a year, showering is more a matter of procedure than pleasure. I don't have to worry about being disconnected from a pump now, but I need help in the prep—being right-handed, and with the blood bag needing to be placed partly under my right arm, I haven't quite got the coordination to tape it on myself; I need Vicky's help to do that until I can figure something out.

Because this is such a process, it also means I shower less frequently. When I'm home I sponge myself with a hot, wet towel on alternate days. When I'm in the hospital, I can go for days without showering, and sometimes circumstances make it worse. Back during my first chemo, the migraines and other problems I was having kept me from showering for weeks. It felt good to start scrubbing the dirt off, but I've realized since then that the lack of daily showers, along with the parts I can't properly soap and scrub clean because they're too close to (or under) the dressing, mean that I won't be truly, completely clean for quite some time.


posted by Emru Townsend at


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