June 13, The Day Your Dad Almost Died

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….”

“They can.”

“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

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Hey Jude — In Our Boats

You’re standing on the edge of a low stone precipice overlooking a raging sea of brackish brine. To live, you must go forward, to step off the cliff and trust that the boat will break your fall; however, you are terrified of this ocean. In fact, entering this ocean in any capacity is one of your lifelong fears. You look around hoping for ideas on how to avoid it. Behind you, the landscape is being drained of color as the clouds of time roll ever onward. This is the past. It has no future, no vitality. To return to it means no oxygen and death within minutes. Going left or right is an option, but ultimately, the past will catch up and destroy you for remaining in a present that will become your past.

Of course, you consider, there is a caveat to moving forward. The boat. Someone–you can’t remember who, said there’d be a boat; however, the boat only exists if you believe it exists. If you stop believing the boat exists, it will cease to carry your weight, and you will plummet into the tumult. If you resume believing in the boat, it will appear, and you will be rescued. If you cannot, you will drown or will have to swim to safety; though, your chances of making it and of still being a whole person are not in your favor.

I believe there is a boat. Three years and 10 months ago, I was in that boat. At this exact time, which would be nearly 24 hours after Jude left us, that boat was literally a hospital bed, and there were only two people in the world on it—Sean and me. We spent night after night together in that tiny hospital bed so close in our grief that it seemed there was room to spare.

Jude’s funeral was on New Year’s Eve, and recently, Sean reminded me of our earthly goodbye to Jude. Our minds are repositories for memories. To get to certain memories, I have to deliberately open a door and walk through it. Then, I go to a shelf, take a box off the shelf, and open it. Like Harry Potter entering a pensive, I can relive vivid memories if I allow myself to. I almost cried remembering the funeral parlor that day.

Rather than perpetually replaying the fine details of Jude’s goodbye, I instead remember the feeling of the moment I stepped off the cliff and landed in the boat. Because at some point that day, I stopped feeling like the ocean would or could devour me. Instead, I felt oddly placid. It was the first time I realized the power of faith.

Losing Jude was one of two things I said I could never survive. The other was my husband leaving me. Now, when I said that, I meant it in the way that my husband meets someone with a much better personality and temperament, possibly someone who knows how to clean and who is just tickled pink to do laundry and to potter around the house dusting things in high heels. I’m kidding. He’s not that shallow. He just would prefer I ask him to listen to fewer audiobooks.

At any rate, I know I have a husband who values the institution of marriage and whose proclivities don’t lean toward infidelity. I still let him know that I would react like a proper crazy person if anything ever did happen because…insurance. More kidding. I didn’t consider the possibility that there even could be a possibility that he might leave in some other way.

This past week, Sean had a biopsy on a mass in the mediastinum to look for whatever was causing his now 4+ weeks of ill health. The doctor, a straight-shooter and a smart man, said he suspected lymphoma; however, he was optimistic that lymphoma was very treatable. Ever since Sean’s biopsy on the 12th when they said, “You know what this (needing to biopsy) means, right?” that they were looking for cancer. I am optimistic about whatever is to come, but before I stepped into the boat, I toed the water in the ocean.

I imagined the worst as our psyches tend to force us to do. Would our daughters remember their daddy? I pictured Eilie waking up at night crying for a daddy who’d never come. I pictured Lucia not being able to remember a daddy who loved her so much. I pictured Lillianne angry, broken, and sulky. I’d have to take them to therapy. But how does one do the job of both? How does one love enough for two? I pictured, too, living the rest of my life being the only other person who cared about and loved Jude the way that we did.

And then, I stopped. Sometimes when he took his motorcycle to work and it was rainy, or just because I knew he sometimes drove a little too fast, I would lay there and scare the stew out of myself with the picture reel of “what-ifs”.

Instead of torturing myself with a deluge of “what-if” scenarios, I’m choosing to get on the boat. Because of Jude, I know it exists. I know it will carry us. When I said the other day in my ask for prayers prior to Sean’s biopsy, I know God has a plan. I don’t know what it is, but I know that if Sean hadn’t gotten sick when our rascals got RSV, then it’s hard to say when we’d have found this thing, whatever it is—whether it’s cancer or something else—and who knows if then it’d be too late? God always has a plan. As much I have expressed that Jude’s passing could possibly have been prevented, I also believe that God had a plan for Jude whether his life was lived physically or metaphysically. Jude’s life has impacted mine and Sean’s in ways there’s no way it would have had he been our normal little boy and had we been normal, happy (albeit, stressed) parents with no experience navigating the rough waters in our little boats.