Sitting down and trying to write this today makes me feel my limitations as a writer. I’m really struggling to summarize this experience. Up to this point, I’ve just been sharing stories, and that’s pretty easy, but trying to express how it feels to have a body stripped down the way mine has is a real challenge. It was excruciating, but somehow not as bad as I expected… so how’s that for clarity?
On the first day I had my PICC (or USB port) line put in. This is the line that allows the nurses to access my bloodstream whenever they need. What I didn’t know, is that they would be using a 42cm catheter extending through my veins from my upper arm to just above my heart. Every time I move my Left shoulder I pictured this thing wriggling inside my veins, something I never fully wrapped my head around.
The next 7 days in a row I was blasted with high-intensity chemotherapy. That was about as much fun as it sounds.
The following 13 days had no real pattern. I’d feel OK for a few days, then worse for a few days. My worst days were surprisingly just 3 days from the day I was discharged. We had NO idea what to expect on any given day.
The entire time (with the exception of 2 days) I was connected to an IV tower dripping fluid. It made an audible griiiiiind click, griiiiiind click, 24 hours a day, 7 days a week. Every time I got up to use the bathroom, pick up a meal, or go for a walk, one hand was always committed to dragging this thing along. Imagine spending 3 weeks with an old vacuum cleaner tethered to your veins.
Similar to my previous treatments, nausea was probably my most prominent symptom and was comparable to what I’ve experienced in the past, but the lightheadedness was a new experience. The nurses would administer a simple test to monitor my progress. They would get me to try to stand up for 60 seconds. If I was able to remain standing for 60 seconds without sitting down or feeling like I was going to pass out, I would pass the test. I lost track of how many days in a row I failed this test. Being such a competitive person, stationary standing became my Everest. I remember one time I was pushing it as hard as I could at 45 seconds. There was a black border closing in around my field of vision as I was working so hard to stay conscious. I just wanted to pass the test so badly! I made it to 48 seconds that day when I finally sat down. A new record.
The isolation ward at the Health Sciences Center is not pretty. The tile in the bathroom is two tones of pink, one the colour of a discount farmed Atlantic Salmon, and the other more of a pastel pink that triggered memories of my grandmother’s ambrosia salad. On my best days, I would walk up and down the single hallway with Amanda. These walks would be the highlight of the week.
Washing myself was a major learning experience. I had a small washroom to myself, with a very small tub, and a handheld showerhead which I never used because for some reason they wouldn’t allow a shower curtain (I dunno… choking hazard). One of the requisite bathing moves (which I’ll admit took about a week to perfect) involved sliding my bum forward as far as I could in order to submerge my torso without bumping my head on the back of the tub. In order to do this, I had to extend my legs up the wall, halfway to the ceiling, and do sort of a quarter rotation hand-on-the-hip chicken wing kind of thing to keep my IV site dry. I plugged my nose with the other hand and thrashed my head around under the water to try to wash the soap off my face and head.
You’re welcome for that mental image.
I was discharged Yesterday, on December 31st and it feels absolutely amazing to be home! My hair is gone, but my facial hair and eyebrows haven’t really changed for some reason… so I look like Dustin Hoffman in “Hook” when Robin Williams stole his wig.
The doctors’ conservative expectation is that I’ll be back to “normal” in 6 months. Right now I’m just trying to set small goals, and take it 1 week at a time. This week’s goal is to make it downstairs to the table for most of my meals and go for a walk outdoors.
So it goes.