When Derek told me his stomach hurt after dinner one night in October of 2013, I mostly ignored him. It was an insensitive moment, but I wasn’t a total asshole, I did offer to make him a cup of tea. I believe hot tea fixes most problems; however, he would rather not drink tea unless it’s iced and he’s on vacation, so maybe I was a minor asshole. I tend to overreact when it comes to Derek’s bodily complaints because they are, on the whole, very rare and I’m not one to pass up an opportunity to worry. But that night, for whatever reason, I wasn’t worried about his stomachache, until he shouted my name from the bathroom a few minutes later.
It became clear I’d misjudged the severity of his complaint when I was summoned to the bathroom. Mothers have told me they can tell by the tone of their child’s cry if it is an all-caps serious situation or merely a lowercase exhausted fit. I am not a mother, but the sound of Derek’s voice hit the tiny bones in my ears and my brain in turn sent out the alarm. All of the saliva in my mouth vanished. I immediately felt like I needed to pee. The walk down our short hall to the bathroom felt like six hours despite my brisk pace. When I got there, I figured out why my brain decided the tone of his voice was all-caps serious.
Not to brag, but I’ve seen my fair share of bloody toilets. Derek, however, is not capable of menstruating, so I couldn’t just point to the pads and tampons in the vanity and hand him a heating pad like my mom did for me in 1987.
“Hi there. How can I help?”
“Hi, I feel better now.”
“Great news. How did, uh, all that blood get in there?” I gestured to the toilet with my left hand.
“I threw up. I feel better now.”
This was the first time Derek had thrown up blood, and I was grateful to only witness the aftermath and not the actual throwing up. We stared at each other for what felt like minutes, neither of us sure what should happen next––should I take his temperature? Should we take a picture of the toilet? Was it finally time to put the kettle on?––and then I broke the trance. “Stay here, I’m going to call your doctor.”
Derek had spent the last ten years being told by doctors he would eventually need a liver transplant to replace the one he was born with because it was slowly being destroyed by his immune system. His disease, Primary sclerosing cholangitis, was sort of invisible—medical professionals noticed his mild jaundice, regular people just thought he was an avid tanner—so despite being chronically ill, we rarely talked about his sickness. But it was always there, hidden, looming, a mold growing inside the walls.
My conscious mind wasn’t fully aware of how dangerous throwing up blood was, or that it was related to his liver disease, but my subconscious was desperately trying to get my attention. Over the years I have amassed a large rolling tool cart of coping mechanisms for dealing with anxiety so I can still function when it hits. I chose to shove this particular style of panic into a little spot in my gut, which felt like trying to get too many novelty snakes to fit back inside the fake can of honey roasted peanuts. But I did it because Derek was in trouble and he needed my help and I knew it would be better for everyone involved if I seemed calm.
The doctor on call asked to speak to Derek. “Your wife tells me you’re not feeling well and you threw up blood. Was it frank blood?”
“What is frank blood?”
“Bright red blood.”
He glanced at the toilet. “Frank, yes. But I feel better now.”
Derek is human where it counts, but emotionally he leans robot. We figure the ratio is 80% robot to 20% human. He likes making spreadsheets and solving math problems to wind down from his workday of making spreadsheets and solving engineering problems. His response to this particular crisis was classic Derek. He felt bad, he threw up, then he felt better. Problem solved.
“Derek. I need you to hang up the phone and go to the emergency room right now. Do you understand?”
Processing…Processing…
“Derek?”
“Yes. I understand.”
He handed the phone back to me and walked down the hall to leave, but my bladder was not interested in carrying its current cargo to the local ER. I stared at the toilet and asked Mr. Blood how a guy like him wound up in a place like this. “Please, call me Frank, my father is Mr. Blood.” I was not supposed to be having conversations with a bloody toilet, I was supposed to be rushing Derek to the hospital. I flushed Frank so I could pee.
~
At the ER we learned when you tell the triage nurse you’ve just thrown up frank blood, they take you right in and put you in a room with real walls, a solid door, and a private bathroom. We also learned Derek was lucky he didn’t throw up again and aspirate on his own blood while he drove us both to the ER, because as a nurse told us with a little shrug, “people typically die on their way to the hospital when they’re throwing up blood.” Before you think poorly of me for not driving, he insisted, he drives faster, and I did not want to drive.
Within minutes Derek was in a hospital issued johnny, his arm hooked up to an IV and his chest dotted with little adhesive pads so a machine could keep track of his heartbeat. A nurse took several vials of blood and I pointed out that the blood traveling from his arm into the little tube looked like our new friend, Frank Blood. No response. Derek gave me what I refer to as a micro smile. It lasts less than a second and serves as an acknowledgement but expressly does not encourage a continuation of the bit. While the nurse finished her work, I talked about Frank and his hardscrabble upbringing and how most people misunderstood him but deep down he was a real teddy bear with a heart of gold.
Seeing a lot of blood on the outside of one’s body was bad, we knew that, but we were both clinging to the idea that maybe it wasn’t that bad. Aside from me trying out new amateur stand-up material and bombing pretty hard, the vibe in the room was tense, but neither of us was willing or able to discuss how dire his situation was.
~
The liver is a heavyweight in the body. It’s the largest internal organ; it is responsible for over 500 functions and, at any given moment, holds about 13% of the body’s blood supply. If it is damaged or even if over half of it is removed, it can regenerate the lost cells. A living person can donate part of their liver and each portion will grow to its optimal size in both the donor and the recipient. No other organ has the ability to reinvent itself, cell by cell.
However, a machine does not exist that can do what the liver does. If your liver fails and isn’t removed and replaced by another liver via transplant, you die. Even if doctors can find a matching liver in time, and you manage to survive one of the top three most complicated surgeries, you might die anyway. Transplants are a treatment for Primary sclerosing cholangitis patients, but they are not a cure. And while the humble yet mighty liver is loath to reveal when it is struggling, it does have the ability to leave clues when something is wrong.
When the liver is failing—and Derek’s liver was about to flunk out of his body—one symptom is an inability to keep up with its main job, filtering blood, and that blood starts piling up. Because the liver is a hard worker, it shoves the blood in other places in the body while it tries to catch up on the backlog. Some of those places aren’t meant to hold a lot of blood at high pressure, like the tiny veins in the esophagus. And sometimes those little veins burst like a cheap trash bag overfilled with sopping wet leftovers from three weeks ago and all of that blood winds up in the stomach, and since blood is not food, and the stomach is a real baby, it rejects it as quickly as possible.
The nurse left us alone and we didn’t talk about the abrupt arrival of Frank Blood into our lives, because subconsciously we knew it meant a transplant was no longer a nebulous, far in the future event. This was simply too much to process, so instead we talked about the real nice weather we were having.
The second time Derek threw up blood was a few hours later, in the hospital, an objectively superior place to be when one throws up blood. I was in the bathroom attached to his room for the 425th time and didn’t hear him. Despite not having even a sip of water for five plus hours, my brain, kidneys, and bladder had formed an ad hoc committee and decided the best response to my husband’s bodily crisis was a biological distraction of my own. I opened the door of the bathroom, saw Derek’s pale face staring at a pink plastic bucket on his lap, and said, “I can’t stop peeing.”
“I can’t stop throwing up blood.”
The nurse came in and whisked the bucket away and then two white coats arrived to tell us they were moving Derek to the ICU. “Are you sure?” I said. “Is it possible this isn’t an ICU-level situation? We had tacos tonight. Maybe he’s bleeding internally because of a wayward corn chip shard?” They smiled warmly as they explained that no, it wasn’t a corn chip, and yes, it was absolutely an ICU-level situation. I believed them but was still pretty certain my corn chip theory should, at the very least, be explored.
Hours later, finally empty of pee, I sat in a hard plastic chair next to Derek’s ICU bed, watching him sleep. The panic snakes I had shoved into my stomach hours earlier were growing, my body was vibrating like a washer on the last spin cycle, and I was close to chewing a hole through my cheek.
While I worried about Derek’s body, I tried to soothe myself by imagining worst-case scenarios. This particular coping mechanism can often dial back my frenetic spiraling, because things are rarely as bad as I imagine them to be, but at three a.m., in the pale light of an ICU, the worst-case scenario when I looked at Derek was always death. I redirected my focus to my own bag of bones and flesh. Was excessive urination during a crisis normal? Was it a good and rare thing doctors would write papers about, or was it a bad and rare thing doctors would write papers about? Why was I now obsessed with having a rare condition that warranted a medical paper while my husband was hooked up to machines in the ICU?
A new way to worry started growing in the grooves of my brain. Could I get a good grade in managing the stress of my husband being admitted to the ICU? I was overwhelmed by a desire for someone to evaluate me, to tell me I was doing a good job. Or just give me feedback so if I was doing a bad job I could try harder, do better. Was I screwing up my chances for an A by thinking about my bladder? Maybe I could do something for extra credit, like the time I stayed up late making a bûche de Noël for French class because I struggled with future perfect verb conjugation. What would the extra credit even be in this scenario? Most of my extra credit projects in school were food based; did I need to make a life-sized Jello mold of a liver?
~
A few hours later, they did an endoscopy on Derek in the ICU, which involved knocking him out, putting a tool down his throat and tying off the remaining bulging veins in his esophagus with tiny rubber bands so they wouldn’t burst and cause him to bleed out. Somehow this worked despite sounding like a bad B-plot from a MacGyver episode.
He was tired but alive and I marveled at his continued ability to compartmentalize. In his mind, his body was a car with a busted fuel line and he would just ride a bike or walk while he waited patiently for the repairs. I’d spent most of our relationship with the reality of his slow but deteriorating condition tucked away, nestled behind all of my other worries. It had been surprisingly easy to ignore the disease actively trying to kill him, but now it was all I could think about. There was a neon sign hanging over Derek’s head, the word DYING lit up and blinking on and off with an audible buzz and click.
Twenty-four hours after our arrival, they moved him out of the ICU and into a standard hospital room. It should have felt like progress, but in the ICU I was allowed to stay with him overnight and now I was subject to visiting hours and was politely but firmly told I needed to leave. The further my body was from his body in the hospital, the further my anxious mind slipped from its tethers, floating away into the upper atmosphere. The lack of oxygen in near earth orbit made me dizzy and disoriented. I suddenly and violently understood how serious the past twenty-four hours had been, how long I’d been holding my breath, how well I had been masking my internal terror with bad jokes and aggressive smiling.
Once I made it to the car in the hospital’s parking garage, I called my sister, and when she answered, my previously good marks for keeping my shit together were trashed by a full-blown tantrum. It took a solid ten minutes of unintelligible scream crying and her cooing platitudes into the phone from Illinois for me to get the details out. Never underestimate the power of an older sister to help bring you back to earth so you can drive yourself home from the hospital.
“Why do our bodies make so much snot when we cry?” I asked her, oxygen finally reaching my starved blood cells.
“It seems excessive, a waste of time and energy, really,” she said.
“Between the peeing and now the crying and the snot, I feel like I could win an award for most liquid produced in a twenty-four hour period.”
“You get an A+ in bodily fluid production.” She always knows exactly what I need to hear. I don’t remember driving home, I don’t remember throwing out the leftover congealed taco meat we’d abandoned on the stove in our haste to get to the hospital, I don’t remember going to bed. I woke up the next morning, on top of the covers, with all of my clothes still on.
We settled into a routine: I’d get to the hospital when visiting hours started and stay until they kicked me out. On Saturday morning, I went to the tiny bathroom next to the nurses station to pee and stared at the metal hook on the back of the bathroom door. The paint on the hook was chipped and I could see the history of the bathroom in vibrant paint layers. The walls and hook were now a muted green color, the kind of bland hue someone decided was calming, but at one point the walls of the bathroom had been frank blood red. When I stood up to flush, I noticed the toilet looked like it was full of cherry Kool-Aid. A lack of sleep and prolonged intense stress helped me quickly determine Derek’s liver wasn’t failing, he had some weird, new, unrelated disease and it was obviously contagious, because now I too was filling toilet bowls with frank blood. After co-writing a paper about my discovery in a medical journal, I’d go on the talk show circuit, explaining how I helped discover a new disease despite getting a B- in High School Biology, which I only managed because I got extra credit for making a DNA model out of toothpicks and gummy bears.
Before I had the chance to practice the speech I’d give after receiving an honorary doctorate from Johns Hopkins, I remembered the beet salad my friend had brought me for dinner the night before. I doubled over laughing and bonked my head on the sink, yowled and then laughed even harder. A nurse tapped on the door and asked if I was okay. “It wasn’t Frank, it was the beets!” I shouted through the door as if that were a reasonable response to her question.
The disappointment which accompanied the realization that I wasn’t a medical genius was overshadowed by the realization that no one was grading me for any of this. Derek’s liver was failing and there was nothing I could do to fix it. It wasn’t beets or a different rare disease than the one we already knew he had. No one was going to give me extra credit for making bad jokes about throwing up blood. No one was going to write a paper about him experiencing a fairly common side effect of impending liver failure and surviving. He was lucky, but he wasn’t a medical anomaly.
By the end of the week, the liver doctor he’d been seeing annually for checkups for the past ten years would put him on the active transplant waiting list, but, in the meantime, I just wanted to get him out of the hospital and back to our house. Derek had successfully kept all of his blood inside his body for seventy-two hours and he deserved a reward. A pediatrician friend gave us her hot tips on how to get discharged from a hospital on a Sunday, a notoriously difficult task: “Find the hospitalist on duty for his floor and stick to them like glue.” I excel at being annoying yet charming and we were home by dinner. For a few hours, I felt like I had a tentative grasp on how to take care of him.
In bed together that night, Derek fell asleep quickly; hospitals are exhausting. My own exhaustion was making me feel nauseated, but my mind kept me awake for longer than my body wanted. I stared at the ceiling, listening to him breathe. It had been four days since the bloody toilet incident and the guilt I felt for not being able to prevent something that was not in my power to prevent had begun to calcify. I should have paid attention when he told me his stomach hurt. I should have known what throwing up blood meant and driven him to the hospital as soon as I saw Frank Blood. I should not have made jokes about frank blood.
A lifetime of being told if I just worked hard and thought positively I could achieve anything had poisoned my brain and I was convinced Derek’s life rested solely in my incapable hands. I’d spent most of our relationship avoiding the elephant in the room; the chronic, incurable disease he’d been saddled with had always been an afterthought for me, maybe because Derek did everything he could to silo it away. He didn’t enjoy thinking or talking about a problem he couldn’t solve. But now Derek’s liver and the illness destroying it had decided they were sick of being ignored and I, always eager to please, vowed to give them VIP status in my brain.
There have been many times when I have felt helpless, but never as acutely as I did lying in bed, listening to Derek sleep, trying to solve the problem of how to keep him alive. When he took a breath in, I whispered “stay” to myself, when he exhaled I whispered “alive.” I fell asleep with my fingers crossed.
