Every day, you are guaranteed a sunrise and a sunset, but you are not guaranteed every day. Recently someone posted something to Facebook about the novelty of the daily sunrise and sunset noting that we get so many but stop to appreciate so few, and let’s be honest…the few we stop to appreciate, at least pursuant to my generation, are often appreciated for posterity. We stop and soak in the sunset over the beach, the forest, the desert, the lake, the pool, the mountain, the ice-cream cone, the top of our daughter’s pigtailed head, so we can take a picture and upload it to Instagram. Look at this moment that I captured without living in it.
It’s dusk right now, and I’ve missed the sunset. I unintentionally missed my daily moment to sit outside and to watch the sun wash the sky with fiery pink and orange, signaling the resignation of the day’s intense heat, as the orb itself vanishes behind the trees in its rote descent toward the nadir.
On Wednesday, June 12, I was only vaguely aware of the celestial display happening outside of Sean’s hospital room in the progressive care unit. A liter and a half of fluid had been aspirated off of his lungs, and he was enviably doped up on what the nurse downstairs described as “liquid Xanax”. It had been a half hour after his oncologist, Dr. Butler, and his nurse, Blair, left when Sean started to run fever. His mouth was so dry, they had to take it under his armpit to register it—102.1. His cheeks were mottled and his skin felt like it was boiling. Tylenol and fluid were ordered, and Sean settled down. Uneasy, I left my phone number with the nurse. “Call me if anything changes.”
His parents visited, and in the time between my return to the house and getting the children to bed and them coming back, I’d already made up my mind. I was going back to the hospital. I hastily packed the small suitcase with wheels, gears whirring in my head, words thumping against each other. I opened a blank Word document on my laptop and emptied everything, what was happening and what I sensed was coming, onto the page.
By the time I’d uploaded the story, Sean’s parents were home and in agreement that someone should stay with him. It was after ten, well after sunset, when I checked back in at the hospital for what would end up being a week-long stay.
I hadn’t planned to be awake before dawn on June 13, but at 4:30 that morning, Sean’s cheeks were once again mottled. The nurse gave him two Percocet and more fluids to lower his fever. His heart rate was in the 160s. They put him on oxygen, and a respiratory specialist was called in. At 5:54 AM, I fired off the first text to Dr. Butler.
At 5:57, a response. “Worried about fever…could be tumor or infection. Highly complex situation. Glad he did not go home. He is very, very sick, but I think you are aware of this. We are trying our best.”
5:58 AM: I know. I’ve been praying over him and you all as well.
At 5:59, I put my hands around Sean’s and pressed my cheek to them, praying. Outside, beams of white light glinted off the spire of a distant church, off the treetops, and off the little brick Forensics building across the street as the sun rose to claim the day. This is the day, this is the day, that the Lord has made….
I felt rueful. I did already know that my husband was “very, very sick”. I knew from the moment that we got the refractory ALK+ ALCL diagnosis on June 4 that time, however much of it there was, was an even more precious commodity, that statistics were no longer as friendly as they were with the advanced stage Hodgkin’s disease, that science simply had yet to unmask all nuances of this rare and aggressive cancer…to undress it and to understand it intimately enough to know how it might respond and to unearth what would tame it.
Still, I thought we’d have more time to at least try. Doctors came and went, attentive, lips pressed into thoughtful lines.
The lead internist comes in. I’m told he’ll be moved to the ICU but that the ICU team will come by first. They might have to intubate him, the way he’s breathing. The internist squeezes my shoulder, and pauses making long, meaningful eye contact. I follow her into the hallway. “Do I need to call his parents?”
“If they can come….”
“Yes. You need to call his parents.”
I nod and slide back into the room. Tremulous. My body betrays my deliberation as I shake. I pace the ancillary room behind the curtain, trying to stop the tremors. Tiny little earthquakes violate me from the inside out. I walk to the bed. “Hey,” the swells of fear break the dam, tears pool and my throat tightens, so my voice is thick. “I’m going to call your parents, okay?”
Sean’s voice cracks, “Am I dying?”
“No,” I lie dabbing the sleeves of my sweatshirt to my eyelids, soaking up the unshed tears. “Of course not. I’m just scared. The ICU is a little scary. They said they might have to intubate you, put you on a breathing tube, and it might upset your parents if they have to see you like that without seeing you here first. No big deal.” The aftershocks reverberate, but I’m no longer lachrymose.
I call my mom first. My parents will need to head to the house to watch the children because I knew that once I call my mother-in-law, she’ll be beside herself to come. I’m worried she’ll panic when I call, but after a brief exchange with my efficient mother, I touch my mother-in-law’s name on my iPhone, and the thing rings. She answers quickly.
“You need to come to the hospital.” I measuredly explain that Sean will be going to the ICU and that they might have to intubate him. They feel it’s best if you see him before if they have to do that as they said it can be upsetting to family. My parents are on the way to relieve them. She understands and doesn’t sound alarmed. She also doesn’t ask questions. Good.
The oncologists, the internists, and the infectious disease team are at a critical crossroads.
It is very likely that he has an infection, so, the oncologist who rounds explains, to start chemo with an infection could be fatal as the chemotherapy lowers cell counts significantly. However, to not start chemo could also be a mistake. If there is no infection, then the cancer is what’s making him sick, and without chemotherapy, he will only get worse.
I watch his chest muscles work furtively as he breathes. His oxygen saturation is good, but why he’s struggling to breathe is confusing. It’s suggested the problem could be related to his cardiac function. An echocardiogram is ordered, and I’m ravenous for more information, for answers, for action.
One of my best friends, a nurse, someone who happened to be there the night we lost Jude, comes to visit. We stand in the hallway, and her face reads like an open book. Her clear, beautiful skin is tight and her bright eyes are wide. She understands the situation, and I understand her. She has the same expression she had four years, five months, and thirteen days earlier on the night Jude left us. Later, she tells me, when she has patients who present like Sean, they either crash or they recover. “He won’t be able to breathe like that—using just his chest muscles—for much longer.”
I’m anxious and relieved when we’re transported into the ICU. In quiet moments I pray. I pray specifically for the doctors and their choices. I ask Sean’s friends from his Monday night men’s prayer group to pray the same thing and to spread the word to our friends to pray, to pray for God’s agents on this earth, the doctors, whose choices would directly affect Sean’s life.
We’re not in the ICU long when the oncology team comes in. “We could keep poking and prodding him,” the lead on the team says from the head of Sean’s bed, “but we don’t think we will find anything. We will go ahead and start chemotherapy today.”
December 31, 2014 was a bright, blue, beautiful day. Not a cloud in the sky. The high was about 55 degrees. We laid Jude to reset that day. Somewhere between the funeral parlor and sitting under a tent that crisp and chilly morning, the dove of peace dipped low in the sky and brushed against both Sean and me. It was an imperceptible moment, a passing from raw, scraped nerves to the understanding that we’d be okay. We weren’t sure how nor when nor why, but we both felt serenity.
It’s as if aloe has been smoothed over my burning fear. They’re starting chemo. Despite no medical knowledge whatsoever (I still say “boo-boo cream”), I know it’s the right choice. My bones stop shaking. All that stands in the way is the echocardiogram, one that after it’s conducted merits the ICU cardiologist to stop, turn to face me at the foot of Sean’s bed and say in his European accent, “I hate to be the bearer of bad news….”
Stop, I want to interrupt. I already know. There is no need for dramatic speeches, not now, not ever. Instead I stare up at him. Patient, unblinking. My mother in law’s form fills the doorway behind the doctors. “His life,” he pauses and holds up his finger, “is literally balancing on the tip of a pin. Any decision we make, even giving him a bag of fluid that he doesn’t need, could push him.” He gestured the pin tipping, the imaginary form on top, Sean’s life, toppling with it.
“I know,” I intone. “I understand. Thank you.”
I didn’t cry when they told me Jude had no heartbeat. In the flurry and fury of everything that happened that night and in the days after, I remember thinking when the doctor said there’s no heartbeat and my brain said to some part of me that could process information, “They are saying that your son has no heartbeat.” I thought very clearly, “What am I supposed to do? Am I supposed to burst into tears?” I searched myself for the appropriate emotional response. For any emotional response. I was aware of myself, sitting in the hospital bed, doing nothing.
Sean started to speak first, asking what to do. I knew there was a procedure, but I’d never given birth naturally to Lillianne, so I insisted we do an emergency Cesarean. My body, my brain, my mouth could respond to action, to hope, to a plan, so I insisted. Furiously. Immediately. Yes, cut me open, cut me now. Get him out now. Try to save him. Yes, I swear I just felt him move, right after I got back in bed. Yes. Now. And then those inner quakes started, and they were so violent, my teeth chattered so hard, that I can hardly believe my heart didn’t explode. I internalize everything, and when I can’t contain all of the things, I tremble and shake as my body betrays my will for control.
On this day, I also don’t cry after the doctor’s speech. I wonder if he thinks that’s weird. There will be time to cry later. Tears come when they want to, not when they “should”. I’ve already been shocked today. But at the same time, I already know that no matter what happens, we are doing the exact and only thing we can to save his life. The doctors have made a choice and are relinquishing control back to the higher power.
Chemotherapy starts. All there is now, I think, is to watch and wait. We’ve done everything we can. That night, I’m curled up like a faithful cat in the sleeper chair next to Sean’s bed, holding his hand, when his vitals settle. His heart rate drops to below 100. His oxygen stabilizes. Before we’d settled to sleep, I’d texted my friend who visited earlier, that I prayed I’d be able to send her a miracle text…that he was okay, stable, doing well. She said she hoped so, too. And in the early morning, after he was awake and the sun warmed the sky, and I knew he was okay, I did text her…just that. Miracles do happen. And this was one of those times.
Days later, a friend from church would share that she thinks that Sean had more prayers than a congregation on a Sunday morning that June 13, and I would read it to him, and he would cry, and I’d cry a little, too, because we’d both know it’s true, and we’d both know that those urgent words to God uttered, whispered, and thought in unison made a lifetime, whatever the duration of that life is meant to be, of difference.
PS: I love you, my sweet four-and-a-half-year-old little miracle son. We don’t know the duration of life. In a million years, I’d never have known you’d only live to be thirty-three weeks or that I’d never get to experience you outside of my own body during that time, but what a life force you are. What a presence you are. How dear you are to me, and, oh my sweet boy, I hope you know how much you’ve transformed our lives here.
“The moment of the rose and the moment of the yew-tree are of equal duration.” –T.S. Eliot