Three years ago this week, Nico and I got married, promised to stay together in sickness and in health. We didn’t know at the time, but I was already sick as I stood front of our family and friends in my not-quite-white dress; I’d been having what we now know were lymphoma symptoms for about six months.
But ignorance was bliss. Our wedding was a blast, the best party I could ever have asked for—and in some ways it’s hard for me to look at our wedding photos because I miss the people we were in them. We look so full of hope, so dreamy, like everything was falling into place and our options were endless. (Though I was pretty sick and fatigued our entire honeymoon, which in retrospect is a depressing red flag.)
Today, our life together is not what we thought it would be. I was diagnosed 18 months into our marriage, and our options and outlook have changed pretty drastically. In my first draft of this I wrote a whole bunch more about this part, but WHAT A DOWNER, you know? It also included some thoughts on society overemphasizing marriage as an institution, celebrating the wrong things as accomplishments, but I eventually decided that that wasn’t the right note for an anniversary post.
As I’ve thought about the last few years together, the night that keeps coming to mind is the first night I was admitted to a hospital. I haven’t shared my long, bizarre diagnosis story. But here is a snippet, costarring Nico:
It was February in Chicago, which everyone knows is basically the worst setting you could imagine. If I was going to write an overwrought fictional story about something terrible happening, I would set it in Chicago in February to tell the reader in no uncertain terms: everything is terrible.
At this point I’d had an ultrasound and CT that both showed something large and scary that shouldn’t be in my body. Not wanting to worry anyone until we had more information, we hadn’t told anyone beyond our parents, my sister, a couple of family friends, a couple of my Chicago friends who I hadn’t been able to keep up appearances with—otherwise, we were kind of pretending that there wasn’t a softball between my heart and lungs, that I wasn’t getting a needle biopsy in four days. I did school readings in the waiting room for my CT (I was in finals, one quarter from graduation). Nico kept going to work. It was a strange time.
The tumor was pushing into my left lung, and it had gotten harder for me to breathe comfortably even before the ultrasound a week earlier. My general practitioner put me on a high dose of steroids for about four days to help me breathe more comfortably, then abruptly told me to stop taking them. While she took me off of them because steroids suppress lymphoma cells and make a clean biopsy harder to get, you should never stop taking steroids without stepping down the dose because (as I learned the hard way) your body will freak out (seriously, if your doctor tells you to do this, ask lots of follow-up questions and maybe get a new doctor). It was Thursday night; I’d told my sister about the mass in my chest only the day before, and she’d gotten up at 4 AM, worked all day, flown to Chicago, had some whiskey with me, and was asleep on our pullout couch. A little insomniac already, I finally laid down around 1 AM. Just as I’d fallen asleep, I woke up gasping for breath.
One of the people I’d talked to since the CT was the research partner of my godmother, a brilliant neurologist who also had cancer at a young age. We’ll call him Dr. A. I’d read my CT results to him over the phone—no one walked me through these, my doctor just told me they were bad and I needed a biopsy. So when I dug through the online notes and read the size and general location of the tumor aloud, Dr. A was silent for a moment; he told me it was large, this was serious, and not to mess around if I couldn’t breathe. If you’re in any doubt, he said, go to the hospital.
I waited a while that night to see If my breathing would normalize. I did some yoga breathing, tried to discern if this was the same as the trouble I’d had breathing for the last week or so. If I can take five good breaths, I reasoned, it’s probably fine. I’d try to just get through the night. But I kept coming up short when I inhaled, like there was a stopper in my chest. “Nico,” I hissed, “I don’t think I can breathe.”
And then Nico’s first new superpower emerged: he could become completely awake in seconds. Who was this! Not the man I married. My husband could sleep through anything. When our old Chicago radiator would clang in the middle of the night, he could grab the piece of wood he kept by the bed and bang on it without waking up. Literally IN HIS SLEEP. But that night? Awake, alert, ready to go in seconds. First he held my hand as I tried to relax, tried to catch my breath. I couldn’t. Silently, speedily, we got dressed, me in leggings and whatever first warm black shirt I could find, him in his usual jeans and tee shirt and sneakers. We grabbed our big down coats and he told my sister we were leaving as we hustled to the car.
By the time we were in the car, I’d started to panic. I called Dr. A on the east coast, who luckily also has the doctor superpower of being able to wake up in seconds; he talked to me as Nico drove.
At a stop sign, I remember murmuring Nico’s name, hitting a new level of panic with every touch of the brakes.
You know how in action movies there are scenes where normal people who aren’t spies or bank robbers are suddenly in league with the spies or bank robbers and have to drive a getaway car? And you say to the person next to you “oh so he’s a race car driver now,” and you mock it for being unrealistic? That was Nico, IRL, with his next new superpower.
He immediately flipped on his hazards. The streets were sleepy, but not empty. I held onto my door as he drove on the wrong side of the street to zoom around the cars in our way.
What if we don’t make it? I asked Dr. A. You’ll make it, he told me, in his calm and gentle voice. And when you get there you’ll tell them that you’re a 30 year old with a 12×8 mediastinal mass and probable lymphoma. Tell them as soon as you get in. Got that? I stayed on the line with him, repeating that in a whisper, grateful to have anything to distract me as I tried to breathe.
I squeezed my eyes shut as he ran the red light at the large Clark and Halsted intersection. We’d made it, finally at the ER driveway. Nico sped to the curb with perfect accuracy—fast but just slow enough that we didn’t jerk forward, again like we’d been dropped into the Bourne Identity. Even in my panic, I remember feeling deeply impressed: who knew this mild-mannered man could drive like that?
I only remember flashes of what came next: a tiny area with a bed, nurses trying to keep me still enough to get an IV in. I was sobbing and scared and still couldn’t breathe, and blood fell on the sheets as they tried. Someone gave me oxygen and a nurse helped me take my first good breaths.
If you have ever been an interesting patient in an emergency room, rather than someone they treat one-handed with their eyes closed, you’ll know how scary and strange it is. There were so many doctors; I was wheeled out for tests, and each time I was wheeled back in, there was a different nurse or doctor, but always Nico waiting for me. Sometimes he was sitting on the hard plastic chair, sometimes he was talking to yet another doctor, sometimes he was making sure I had enough blankets in the freezing hospital or trying to get the nurses to give me water. As the many doctors decided to admit me upstairs and we waited for a bed, the hours since we’d slept crept toward 20.
This next superpower I already knew about, but I got to see it reach new heights that night: his ability to make anything cozy, find a way to create comfort out of very little. I couldn’t fall asleep in the noise of the ER, and I was desperately tired. Nico got me yet another blanket and closed the door, making the tiny room even tinier, and pulled out the book I’d brought. It was a Mrs. Pollifax book, a set of old paperbacks we’d taken when my parents moved, about a hilarious middle-aged woman from the suburbs who becomes a CIA agent in the 70s (hijinx ensue). As we sat in that little room with the sounds of the ER slightly muted behind the door, Nico read in a soft, even voice that belied his emotional state and our surroundings, like this was just any random night. A sense of calm settled over that strange little space, transforming it into somewhere only the two of us inhabited. I drifted off. Nico did not—he sat sentry next to me all night, terrified that the doctors were wrong, that I would stop breathing.
By the time my godsister arrived fresh off a red eye around 7:30 AM, I’d been admitted to a larger room upstairs after my few precious hours of sleep. Nico was exhausted. I found out recently that part of the emotional exhaustion was compounded by the way the doctors had talked about me while I was sleeping. An ER doctor pulled him aside, told him quietly that they were taking good care of me, that it was going to be a long battle.
After a week of pretending that this would be fine, even my eternal optimist had finally crashed at the unexpected gentleness of the ER attending physician. Maybe, he realized, things would not be fine. More than a year later, he told me that that night and for a while after, he didn’t think I would survive. I just didn’t see how you were coming out of there, he said, referring to this hospital visit and the next.
Luckily, he had backup. Nico went home around 8 AM and Kate and Meg took over at the hospital. He slept, a necessary thing that caregivers of all kinds forget or ignore or are forced to abandon. This was lucky; he rushed back when a surgery slot opened up around noon, and even though I could tell he wanted to, he didn’t break down as we signed the required end-of-life paperwork before I went to pre-op.
What came next is a much longer story: six days in-patient, two pre-op rooms, two hospitals, and a whole lot more scary paperwork were still to come that week (and that next year and a half, I guess).
But we made it through that first terrible night because Nico grew superpowers when we needed them. And we made it through the next day because I did the same: I bounced back, making decisions and propelling us forward when Nico got overwhelmed—and because we both knew to accept the help our family offered, rather than turn inward and become isolated. He put his own feelings on hold, his own fears about what this meant for his life, the life we thought we would have together.
When I was admitted a day later to Northwestern (we left that first hospital) and Nico first saw me in the oncology ward, fully outfitted with tubes and heart monitors in a room that felt oddly permanent, he broke down in tears. I laughed—which I’m pretty sure is not the appropriate response—and I yelled at him: “No no! This is good! We made it here! You’re only allowed to cry in the hallway!” He wiped his eyes, and in the midst of all the tubes and blood tests and the world turning upside down, we both laughed. How the fuck did we wind up here?
So here’s to my husband, my fellow lover of books and our tiny dog. The person who can always create a cozy little space, and will always find a way to laugh, even when things are dark and scary and absurd. I’m so glad you’re my getaway driver.
*Insert happy sobbing*. This story is terrifying, gut-wrenching and beautiful all at once. Even though I barely know you, I’m so grateful that you have such an amazing partner by your side!
Aw thank you Kip! That’s so lovely.
This was a great read Nora! I was on edge the whole ride to the E.R. Praying for you and so thankful for you wanting to share your journey. Take care.