This morning I was at the clinic when the doors opened, 7:00am, to have my fasting blood draws (glucose and lipids) done. It was already broad daylight, but still early enough that the express lanes were quite expressy as I raced across the Ship Canal Bridge, after a brief stop at Essential Baking to pick up my post-blooding breakfast. Yesterday a scheduler for the SCCA called me to set up the 7:00am Port Access, and was able to move my Herceptin infusion back from 8:30 to 7:30, so that I could open that department as well. This all struck me as quite a fine plan, as it would allow me to be back at home just a little after 10:30, or more or less the time I'm ready to start thinking about the day, anyway. It would be like an infusion in my sleep!
Having finally realized that one of the only things I truly hate about my position in life as a cancer patient—hate with a passion—is sitting in those awful, uncomfortable, noisy vinyl chairs, I was excited for my first bed-anxiety-free infusion appointment. After my last visit I had asked when to come in for a guaranteed bed and was told that things were pretty open before 9:00. Well, 7:30 is way before 9:00.
Nevertheless, when I checked in at 7:25 I said, "They'll just put me in a bed, right, getting in here this early?"
"Why?" asked the check-in lady, someone I didn't know from my afternoons. "Are you having a long infusion?"
"I'm getting Herceptin, which is scheduled to be over 30 minutes, but I get it over 90," I said. "It just feels wrong to do it in less time, so yeah, I'm here for at least a couple hours."
"Oh," the check-in woman said vaguely. "Well, I'll mark down that you'd like a bed."
"Thank you," I said, and took my pager over to a seat by the window, where I could look out at the unfamiliar sights of both early morning and sun glinting off of southern Lake Union.
The lady called me back by name a few minutes later (they instituted the pagers to maintain more privacy but I guess I didn't get that this morning), and sent me to bay 45.
There are 43 sequentially numbered beds.
I went into the back, past empty room after empty room, to the chairs, just to be sure. I took one look, and turned back to the area infusion desk, where nurses congregate between patients and where bay assignments are made.
"Hi," I said, smiling, to the nurse currently sitting behind the desk. I like the nurses. They're very nice, they like their jobs, they're friends with each other. It's a warm and supportive place, the infusion room, an oasis in the blinding, skin-scouring, howling sandstorm of terror and sadness and pain that is often the cancer experience. I think it would be a difficult job. These people do it very well. "I want a bed," I said. "I came here early so that I would not have to sit in those chairs anymore. I hate the chairs," I said.
She smiled. "Oh, I understand. That's the lady in charge," she said, and pointed to another woman, up on a stool at the dry-erase chart, figuring out which patient to give to which nurse in which location. It was a woman I recognized from sometimes working in the check-in desk; she always complimented my engagement ring, so I had thought she was quite a fine person.
"No, there's nothing," she said shortly, glancing over her shoulder at me. "I have several people coming in later this morning who will be in for 3 and 4 hours."
"Whoa," said a different nurse, who turned out to be in charge of me for the day, "how about 43 right here? I'm just going to put her in there."
"I have someone in contact isolation coming in. Where am I supposed to put her?"
I started hemming and hawing, my guilt kicking in, but my nurse (I'm sorry, I really can't remember any of their names right now) said "No, Calin, go into 43. It's fine. Go and get settled."
So I went into 43 and my nurse shut the curtain, then lowered her voice and admonished the scheduler lady. I couldn't hear what she said, but I could hear the response: "I'm just doing my job! I am JUST doing my JOB."
I feel badly enough already for the cancer patients who are not as lucky as me. I know that people in that infusion room are dying. I know that people there are divorcing. I know that some are deeply in debt. I know that some have other diseases (bay 43, however, with only a curtain closure, was functionally no better than an end chair bay for someone in contact isolation who, I overheard, was happy to have a chair. I was not that problem.). I am probably the healthiest patient to pass through that infusion room. Hell—I might be the healthiest person to pass through that clinic full stop. But I have been passing through that clinic and getting jabbed and poked and irradiated, having my stomach upset and my dignity abraded, FOR THE PAST TEN YEARS SINCE IT OPENED, AND IT IS SHOWING NO SIGNS OF STOPPING.
I WANT A BED.
Part of the problem is that the amount of time allocated to "Herceptin" in the first scheduler's worksheet, the one who reserves the date and time, is 30 minutes for the infusion, which implies a visit of roughly an hour to the infusion room. Granted, that doesn't appear to be very long. I, however, take my Herceptin over a more leisurely hour and a half, and all things being considered, I am usually in my bay for around three hours anyway. This morning I was just shy of that, and there hadn't been any time for delays to build up. The infusion room nurses know my preferences and they know why—when I receive Herceptin faster, it makes my heart feel slightly, indefinably oogy. Herceptin, over time, is cardiotoxic. So far, my heart has been up to the challenge. I wish to keep it that way. And so the infusion room nurses are happy to give me a bed and let me hang out as long as I want. They don't care what the schedule says—to them I am a human being, not a time-frame.
But I have yet to figure out how to have everyone along the way see me as a human being.