When I began Thursday in the arms of a surprised nurse, I knew I wasn’t going to go home that morning, as I’d hoped. The nurse who had last come to take my blood pressure told me it was very low and she reminded me to call for help if I felt dizzy.
There are signs posted in each hospital room that glow in the dark with the image of a stick person taking a tumble and the message, “Call! Don’t Fall!” When I don’t have my glasses on, it just looks like a faintly glowing cube, but it should be ingrained in my head. In my last room, the bottom of the sign was cut off by a lampshade, and I would imagine it was a misspelled invitation to go back to “Calli” and catch a wave.
It might have been this whimsical thinking that got me in trouble. When I got up to go to the restroom Thursday morning, I didn’t feel dizzy. Going to the bathroom in the hospital is so much of a production, with the urine hat and output measurement. I think I managed to scrawl 500 cc on the piece of tape I where I was recording, but when I got to the sink, I was dizzy and started to see spots. I broke out into a cold sweat.
Luckily for me, when I opened the door, a nurse was standing right there. “Help,” I mumbled. “Help me. Help, help, help.” Then she was holding me upright and calling for backup.
I’m not sure that I could have made it the four feet to the bed without the nurse. Maybe. But as soon as I saw her, I knew I wouldn’t make it back, not without her help. And I knew I wouldn’t go home in the morning. They did some sort of test with things taped to me—I kept finding those 3M stickers all over me yesterday, like I was a dorm room wall. My near-fall was due to my low blood pressure and my lack of calling to avoid falling.
Of course, if the doctors wanted to raise my blood pressure, my boyfriend pointed out, they could have sent me down at rush hour to hail a cab to Brooklyn. “After you banged on the hoods of a few cabs, you’d probably be OK,” he told me yesterday, as we stood at the crosswalk and I threatened to make citizens’ arrests of the drivers halfway in the intersection.
In the end, the doctors decided to give me my very first blood transfusion, because my hemoglobin was low. So my transformation to Nosferatu progressed, as I impatiently waited for my blood to arrive. (I finally found out what kind I am: A+. The nerd in me loves that. A-plus!)
If the past day and a half had been a blur of sleep—I keep forgetting that an entire day happened—then the last few hours waiting for blood so I could leave made up for it. Time went from slipping by, hours at a time, undetected, to ticking down minute by minute. I longed to turn into a bat, fly out the window, drain a victim of my necessary blood and then wing my way home.
The blood transfusion itself was actually without much fanfare—they just hang a bag and there you are. I got my blood through my brand-new leukapherisis catheter, so that means no more IVs. Just in time, because I’m pretty sure I’m fresh out of veins. My right arm, with its painful clots, was out of the running this time, and they got one into my left for the beginning of the chemo.
For the procedure, they put in a neck IV and used lidocaine to numb me up first. As much as I worried about it, the catheter placement was actually pretty easy. I was wheeled down on Wednesday, sooner than I thought, and kept in a waiting room for a short time. Someone asked me if there was anything I was nervous about. “Mostly if I’ll say anything weird,” I admitted. She assured me I would probably sleep.
When I was wheeled to the procedure room, someone called being put out a “four-martini breakfast.” This alarmed me. I never have four martinis. I never go beyond two. I live by the Dorothy Parker quote. (“I like a martini, two at the very most. After three, I’m under the table. After four, I’m under my host.”)
I figured out this martini thing even before I heard the wise words of Ms. Parker, the first time I had three martinis. Why was it so easy to tell everyone what I really thought? Even when martinis were $3 each at happy hour within walking distance of my apartment in the Midwest in the late ’90s, I spent $8 (including tip) and called it a night. Or, more likely, I opted for a less potent cocktail after one cheap martini.
Not long after my pronouncement of a two-martini limit, I broke my rule, because someone bought me a third. That was a terrible mistake. I spent the night blithely telling people what I really thought. It’s really a mixed blessing that I remember what I said. Thought it felt briefly liberating, that kind of stuff should be bottled up, never to be loosened by a bottle of gin or vodka.
So you can imagine my reservations when a member of catheter team announced, “OK, here comes five martinis!” Five? I think I would pass out. In fact, I hope that’s what happened. I don’t remember saying anything, not even my usual farewell to the doctors and nurses or alerting someone that I feel funny. I woke up later, bewildered that anything had even happened. (So if you have the equivalent of five martinis, there’s your urban legend: You’ll wake up in the hospital with a tube sticking out of your chest. It happened to me.)
So the catheter in my chest, and my old IV is gone. I also have Steri-Strips where the IV was and something there. A tube I think? Five martinis. Did I dance too? I wonder if the team saw me as a fast-forwarded version of myself drinking five martinis. Was I happy, then suddenly tipsy before deciding to tell everyone the operating room the truth? Did I then decide to dance or do karaoke before becoming surly, announcing I was going to lead a revolution and then passing out?
I slept all day Wednesday. Sometimes, I would wake up and think, Oh, my phone is in my hand, I should put it on the table. This happened about four or five times before I stayed awake long enough to do it. I am, essentially, being poisoned, and sleep isn’t so unusual…or so bad. I will take it over any other side effects.
I also lost my mind. Briefly. Being in the hospital is tough. I’ve tried to be cheerful through all of this, to look at the bright side, to remember this is just temporary. But everyone has a breaking point, and it’s a straw that breaks the camel’s back. Something insignificant.
After I was moved to a new room, my chemo pump/constant companion started beeping. Sometimes it’s like being moored to the Looney Toons Road Runner and you understand why Wile E. Coyote had so many anvils.
I try to do everything I can to avoid pressing the nurse call button. I’m among the more able-bodied (during my recent stays, at least) and there’s no point taking up people’s time with stuff I can do myself—especially when I have so little I have to do. (This last time, I saved all my urine for 12 hours in a container, so I finally have something to fill on those job applications that ask you for a fun fact about yourself in 140 characters or less.)
I empty my own urine hat and record everything on my door. This also saves me the small humiliation of calling someone on a sketchy intercom to say, “My urine hat is full!”—or worse, if they don’t hear, “I PEED IN MY HAT!” Plus, I’m a little afraid of the intercom people.
Part of is it that you never see them. And the other part is that you sometimes can’t hear them—or worse, they can’t hear you. So, after pressing your button, you wait. Sometimes, you just hear a click and say something uncertain, “My machine is beeping?” Sometimes, someone says, “Hello, how can I help you?” and you tell them your machine is beeping and he or she says a nurse will be alerted. That’s the best case, and thankfully, that’s usually what happens.
Sometimes, though, no one hears you. “Hello? HELLO?” you hear clearly. But they can’t hear you until you raise your voice. Then you feel like a jerk.
Also, I’m not as quick to shout when something’s wrong. (Unless I see a cockroach—then I will drop everything I’m doing and scream at the top of my lungs.) I’m more of a mutterer-and-repeater, as my early morning near-fall shows. That was also my reaction when one of my extra tubes (I’m not sure what it was, it was to keep my other machine from beeping) came undone while I was trying to untangle my machine’s electric cord and blood started coming out. I’m not good in those situations. When I see blood, I’m kind of like that kid from The Shining. As blood pooled from the tube into my hand, I thought, It’s going the wrong way. Again, a nurse was close by so my, “Um, help, help, help can you help me?” was answered promptly.
So obviously I’m not a great communicator. But once you press the button, where do you speak? I sometimes speak into what looks like an intercom, or a shout to the air.
Once I pressed my button, someone said they’d let someone know about the beeping. Then I waited for 20 minutes. I made sure it was 20 minutes, because I was scared to press again. Sometimes, during my second stay, I’d get mixed up like it was a walkie-talkie and press again as if I were signing out. They were not amused, and I was embarrassed.
When people are pressing the button because they’re thirsty or have to use the restroom, they’re often pretty weak. My first roommate would have to call two or three times. Sometimes, they hear her, I think, but other times, I could hear her and they wouldn’t understand and no one would come. She had a bit of an accent, but I’m not sure why so many of her calls went unanswered. Sometimes, I called for her.
So I developed an early fear of the intercom. And when I called again, 20 minutes later, they couldn’t hear me. “Yes? Hello?” “MY MACHINE IS BEEPING.”
Someone shut off the machine, but something inside me had loosened. I started to cry and I couldn’t stop.
In kindergarten, I almost got my finger stuck in the paper towel dispenser. Almost. It barely scraped my finger, but I started to cry and couldn’t stop. I wouldn’t stop. The teachers had to call my mom and grandparents, who threatened not to take me to Sea World later as we’d planned. I finally pulled it together after that.
I couldn’t tell anyone why I was crying though. Was it the horror of the gaping maw of the paper towel dispenser? The sadness of the world on my 4-year-old shoulders? A future premonition of Blackfish? I remember this, but I still can’t say why I was so sad that day.
When the nurse practitioner came in on Tuesday, I was still blubbering. I felt like that crying kindergartner. I was four again as I tried to explain to her and to the social worker and to a nurse why I couldn’t stop crying. They asked if I felt forgotten, slighted?
Yes, I was upset. I finally explained that I tried so hard to not be a pain and I just felt like I was, having to call and having to yell. I felt like a burden.
That, of course, goes deeper. I don’t like feeling like a burden on anyone, but it’s hard to not feel that way when you’re not 100 percent. Tuesday felt like the reaction to everything sad that had happened to me since I heard I had cancer a year ago.
The social worker helpfully started in on several theories to help me. “Being in the hospital can be hard…” she said, as I blubbered and nodded in agreement.
It’s hard. I’m going in for 26 days, and I can’t imagine it. I’ve been in a total of eight days or so—and feeling relatively well.
You’re not in control in the hospital. Sure, you can wheel yourself to the bathroom when you don’t feel like falling over and you can choose what you want to order when you’re allowed to eat or not throwing up or sleepy. But you also have to keep track of your urine and you have to call people for things like helping you to stop beeping.
Even in the best hospital environments, when everyone is trying to help you, you’re still alone with your thoughts just enough to drive you insane. Even if it’s for a minute. Or, in my case, an hour or so.
The hospital is hard—and surprisingly dry, somehow devoid of all moisture, despite my waterworks. After only three days there, my face is peeling, my lips are chapped and the inside of my nose will bleed spontaneously. My scalp is dry and flaking. I have to drink at least two liters of water daily, but I’m always thirsty anyway. No wonder they give you so many fluids while you’re there; it feels as if you might evaporate. I feel like most of my houseplants must have felt before the cat finished them off. I am a husk.
The hospital smells weird, because it’s so devoid of smells. When I came home, the normal cooking smells coming from my apartment hall were almost too much. In the hospital, there’s the orange cleaning smell and food sometimes and then kind of this funk. It’s different from dorm room funk, but it’s a human funk. To me, it smells a little like popcorn, or like popcorn in its saddest form. I awoke from a three-hour nap Friday enveloped in the funk at home, and I can’t find its source.
For most of Friday, I would wake up for a few minutes and see the cat looking at me across the bed. We would blink at each other slowly, like two sun-drowsy alligators, and then go back to sleep. I napped with the covers pulled up to my chin so the cat wouldn’t bother my new plastic attachments. She loves eating plastic. I hope to give her enough credit that she won’t try to steal my new equipment from my chest cavity. She seems to walk gingerly around me these days. (It’s far more likely the other, clumsy cat will accidentally pull out my line.)
For emergencies, I have clips, in case my line gets compromised and I start losing my blood. It’s hard not to think everything’s out to kill me. I keep my clip close at hand, but mostly it’s the area at the root of my spine—the center of squeamishness—that suffers.
In the meantime, I am feeling good and energetic. I’m happy to be home and am hoping to avoid a hospital stay before my next scheduled one in April.