Part 2: the beginning of the end

a baseball bat to the memory bone

This is the second installment of a multi-part series.

I recently watched Mark Maron doing a bit about a baseball bat. He was pointing to the absurdity of two things: protecting himself from intruders with the hickory stick instead of a gun, and then, as a follow up, he demonstrated with detailed mimicry, how hard it would actually be to commit suicide by hitting yourself in the head with a baseball bat. Barbi and I laughed until we were shaking.

Stella Blue had her own moment with this trope on a horrible day near the end of her life; she too meant it as a joke. It was for me, and it landed. This moment happened; I know it did. I remembered it and reveled in it, the bravery of it, the moxy, until I wrote it down on caring bridge; and then I remembered it because I wrote it down.

The beginning of the end:

On January 29th, 2020 Amy and I sat across from each other in a darkened room in the Seattle Children’s Hospital’s HemOnc unit, not speaking for fear of waking our sweet girl. We were stuck in a brief secondary grief, one of our own making: we could not agree how or when to tell Stella Blue her cancer had spread and she was going to die.

Our beautiful, rail thin, once-healthy youngest girl, surrounded by her soft stuffies … so numerous, arms crossed on her chest, lay dozing next us. We wanted to keep it that way; if we started talking again we would quickly fall into argument about whether or not to tell her; arguing would wake her. Instead, we sat in silence. I was obsessing on what she might be thinking … ‘does she know she’s dying? of course she does: we have to tell her, she needs to know; could she tell we were fighting? maybe I should wind us up again, wake her up and then we’ll have to tell her‘. Amy had her eyes closed, head tilted upward, and she was hunched forward, elbow on knee; she was facing her daughter as always. I don’t know what she was thinking.

An hour earlier, before she succumbed to her latest round of drugs, Stella was propped up in her bed, eyes open, texting her friends, fingers flying, assuring them she'd be coming back to school ‘so soon’. This girl, the one whom we love beyond measure, who was supposed to outlive us by 40 years, who hadn’t yet finished 8th grade … this little person, this girl of my heart, so much like me, so young in the world … she was ‘not going to make it’.

That we hadn’t yet told Stella on this day, is a story I know to be true.

Amy received the mortal news alone two days earlier on the balmy, winter evening of January 27th. A nurse peeked her head into our low-lit room where Amy sat quietly with my ever-ready mother, Nona, and a sleeping Stella Blue and said, ‘The doctor will be right with you’.

We kept the room dark -save the lights from the machines and the string lights Amy brought in and hung on the equipment, on the curtain cords near the entry and over the TV - for Stella. She did this always, this sprinkling of our home aesthetic, whenever we went on vacations too … wherever we went she brought colorful lights to make it feel like home. The room was otherwise dark because Stella had started to worry the light, she said it hurt her eyes, and for that reason Amy shut the curtains across the hallway, the curtains at the windows over the parents bed area and turned all the awful, overhead lights off.

We were back in this part of the hospital for the first time since our initial visit on April 13th, 2019 when we’d been given the original diagnosis … the beginning our journey of hope and oblivion. Stella had completed her second chemo round in 9 months, finished her massive Proton therapy sessions and otherwise been given a big green light to return to her normal life. And though there were appointments in December, and there were lingering effects of the radiation, the word was all clear in December. But in early January 2020 we’d started to see some problems, or rather, continued to have problems. So, three days prior, to get some answers, Stella had demanded that we bring her in … we weren’t arguing, but she was more direct about the need. It was Sunday and she didn’t want to wait to schedule with our regular team. She was constantly nauseous. On top of that her face had been burning, still, long after radiation was over. On top of that she was nauseous, she was experiencing abdominal pain, head pain and she’d been throwing up constantly. And the pain in her upper leg was just too much.

While we wrote emails to the team the week leading up to this and explained what she was feeling and communicating, we were ultimately yoyos, vacillating between pure hope and extreme exhaustion: more than anyone she was convinced she simply needed to come back to the hospital.

Having pushed through the ER doctors’ comments of ‘she pulled a muscle’ and after some forceful requests, we were granted an MRI sent up to the HemOnc center to get fluids, sleep in the in-patient room, wait for the results and get in line to see our doctors the next day.

So, on the night of January 27th, not knowing we were yet due to receive any news on the matter, Nona opened the sliding door to our room and stepped quietly out into the hallway, leaving Amy alone with a doctor we’d never met for a meeting she was unaware was scheduled.

I was out running on the Burke Gillman trail, assuming we were acting the nervous parents, talking myself down from the new terror, confident she was experiencing a muscle pull … ‘it’s just a muscle pull, right?’ and ignorant of the event that was about to transform all of us forever…again.

When they were done talking in the room, Amy followed the doctor out, turned to my mother and simply said: ‘It’s everywhere.’

When I asked my mother to recall the moment Amy shared the news, she had to think about it. I’d always wondered how it happened, what had been said, how Amy reacted. My mother and I were on the phone having one of our weekly calls and she was silent for a long while when I asked her. I was standing in my apartment, at the kitchen counter, staring at the fruit stickers I’d plastered on the cabinets … like I did at the old house, the ones Stella reminded me to pull off stick on the doors … waiting; it was a long silence. ‘Well…’ she said and paused again. When she finally remembered, it was for the first time since it happened, she told me.

‘“It’s everywhere”’, that’s all she said’, my mother finally told me, ‘“it’s everywhere.”’ She seemed surprised that was all that was said. Succinct, tells the story. Also, this was this a type of holding back Amy did with my mother … there was some reservation she had … she never fully let her in; I wondered if it was connected to her knowing … or was it worrying that we weren’t going to survive as a couple.

After she told Nona she pulled out her phone and called me.

I was running with the phone clutched in my hand and when it vibrated, I stopped running, turned around immediately, put the phone to my ear and started trotting back toward the hospital. ‘Hi, what’s up?’

‘Hans, I have bad news.’ Her voice was low and off, deeply troubled … if she’d hung up I think I would have known what she was going to say just from her voice.

‘She’s not going to make it’, she said.

I’ve tried to recall exactly what she said but to be honest I’m not sure. Memory is a funny thing. But I’ve picked through all the phrases and this must have been her words; we used this phrase often, in my remembrances of this time at least, remembrances of the conversations we’d had; I just know the phrase has a place here, in this moment in time, at this point in the story, in this brief settling of the score.

‘She’s not going to make it.’ Make it through. Make it back. Make it to 8th grade graduation. Make it to life-as-it-was.

She’s going to die. What an insane idea finally being cemented after 10 months of hoping against hope.

‘No, no, no, ‘… came vomiting out of my mouth until I crashed to my knees, rolled off to the side of the path and wailed uncontrollably.

Of course that was the word: No. Denial. No. Again and again I said it. I’m not sure how I heard her remaining words, or if she even kept talking; I think she stopped talking and just listened to her husband reacting to the worst news of all … I have a vague recollection of her soothing me with, ‘I know … I’m so sorry’.

Two years later, when I relive this memory of hearing it was over, that my Stella Blue was going to die, I feel a large portion of the initial emotion … but it’s shifting. I’d say it’s the same every time because the pieces are all there and it feels huge, but I’ve learned a lot about my own memory and a little about the science of memory since then; traumatic memory is a slippery beast. What I’ve learned is that each remembering is actually a new version of that origin moment, built upon the last remembering which replaced the one before that; and there are additions to the memory that aren’t always accurate, or at least aside from the emotion of the memory (subjective at the start), flash images and tangential input about the memory as time goes on can alter it. When I learned this about memory recall, it made me question the choice or compulsion to remember. Memory is a series of echoes, diminishing and shifting slowly over time. And memories of Stella and of feeling her pain and the time around it are precious. I best protect them, it would make sense to be thorough and careful when engaging with these singular instances.

Writing it down is my life hack. I’m placing it now, adding from what I wrote early on, so one version at least, this one, can stay secure, safe? unmoving.

This call, hearing Amy’s words is the singular moment of my life; there’s everything before that phone call and the ongoing, sorrowful now. I know because this time of year comes around and my body reacts to it … it’s a bit like north on a compass. Recently a friend reminded me that I was doing a lot of caregiving of Amy during this time and also afterward, I’d been told that before, during the time; I’d be curious to know what she says about this. But I know I was responsible for talking to the doctors, our friends and being the voice outside the room; Amy stayed in the room. After she died I went straight back to work, I needed to keep the company from drowning as Covid exploded; Amy was at home, actively and positively grieving. NOW, I’m starting to grieve, hard. I didn’t get a chance to before

And here I am writing THAT down … to be true everymore?

Back on the path: my body hurled out sounds I’d never heard before; I was yelling and sobbing at the same time. All the hope and holding and believing and fear of the truth resolved and burst in one moment. 

In the past I didn’t allow myself to cry, chalk it up to toxic masculinity … whatever, I have always been cornered by this shame; my face would block it, screwing into weird shapes, nostrils flared to keep the tears in, and I could … nothing was ever so bad I couldn’t think faster than the emotion and block it. 

When I was a child, I would lay on my bed on Saturday mornings, in my room, bottom of the bunkbed, sobbing from some unknown sadness; it was sweet surrender, hot tears for what, I could never identify but it felt, if I’m remembering properly, it felt like something larger than me. My mother says she doesn’t remember this; but as I grew into manhood, I concluded that I released all my ‘real’ crying back then, in those romantic easy tears, and forever afterward would be able to bear and receive grief without crying. And I was fairly good at it up til now.

On this day Stella took my body and squeezed me out like a wet sponge and threw me on the ground. (Stella, think the Hulk smashing Loki in the Stark Tower at the end of the Avengers movie).

The bikers and runners on the trail who passed slowed to a standstill, headlamps trained on me and reached out their hands in a gesture of comfort. I heaved tears at their attempts, and they backed off with sideways glances and returned to their blissful evenings with pained expressions, looking over their shoulders as they left the stranger with strange sounds coming from him.

(Again, why do I remember how these strangers felt?)

It was the hour of the wolf and the dog; I stumbled along, with no energy to run, bikes and joggers with bobbing lights passed me like the world hadn’t just ended; the ground was suddenly made of something new that my feet didn’t recognize…it kept jumping up at me, and I felt at once twenty years older and like a child alone in an unknown city.

During the endless walk back, I’d called Kaleo and my brother, Justin, with broken sentences and a sliver of a brain. Telling them the news felt mean, like I was responsible for their new pain.

I floated through the hospital hallways toward Stella’s room afterward, in shock, I wondered if Stella was awake, how to tell her the news, how to tell Charlotte the news  and what life was about to be like without Stella shouting into it. I found out much later … or I had to ask again recently, Amy called Charlotte and told her something was wrong; Charlotte doesn’t have a strong memory either, other than she and her besty took an uber from the gym to the hospital. And she remembers our resident doctor, Natalie Wu, very kind person, standing in the hallway telling her how sorry she was, apologizing and crying while she did so.

I don’t remember arriving in the room and seeing Stella’s body lying on the raised bed of pain.  There were surely tears and we must have talked to the doctors some more, but I don’t remember anything about the rest of the night; its a blank. My mother told me on the same weekly phone call, she noticed something when I came into the room that night: Amy and I neither embraced nor touched each other. She said we didn’t do so for the rest of the night.

Over the next several days we lied to ourselves, though we didn’t know it at the time. We weren’t admitting the truth, we couldn’t admit the truth, it was anathema to our life mission admitting the truth.

Also there was too much to do; Stella was at an all-time pain level and our every moment was dealing with that pain.

I talked to the doctors in the days following - where Amy couldn’t bear it – and together we kept on top of all the drug dosages and timing of each, double checking what we thought was too much, advocating for Stella when we needed more or less of something … I relished having a job to do, a job to do well; caretaking … I don’t know how Amy held this task. Amy had no interest in the team of doctors coming into the room during their daily rounds, she was constantly with Stella, never wanting to be away - in case she awoke … so she could love her and be right there for her, nothing else mattered; and she didn’t want the talk in front her daughter yet … we were hiding a secret.

I walked out to share with our broken friends who came to love us, share whatever new news there was. They were in the lounge always, waiting, communicating to the community for us, feeding us, loving us.  But now there was nothing new beyond sharing how we were working to stave off the pain. It was all over; we were headed toward the end-of-life mystery; all the big new news had been delivered.  Left was only the task of doing the next best thing for our girl, staying present with her. And the overall goal was, ‘plan for your daughters end of life’.

So, on January 29^th, as Amy and I stared across Stella’s prone body, keeping our anger in check, fighting back the urge to argue, we were shells of ourselves, exhausted … we were toast. Not just from the last 10 months of caregiving, but from the two new forms of stress: walking our daughter toward her death and, at least for now, keeping that secret from her.

This is my traumatic memory recall mixed with conversations I’ve had with others, and though I first wrote this part of the story down in March of 2020 I’ve added. It is a memory on top of other memories.

Three days later, on February 1st, we were entering the mouth of the dragon. Stella was descending rapidly and we still hadn’t told her of her impending death.

Because of the astonishing amount of cancer spreading throughout her body Stella was experiencing levels of pain she’d never felt before. It’s listed in the reports as, among other things: innumerable osseous metastatic lesions throughout the visualized axial and appendicular skeleton. It means the cancer has broken away from its mass and bonded with the bones in every part of her skeleton. I had never been told what everywhere meant, or, if I had in that one terrible meeting two days earlier with all the doctors and radiologist, I’d blocked it out. Recently I started combing through her medical records that I’d requested two years after her death. The findings of the MR without contrast taken at 16:51 on Jan 27th could more easily be understood as 'everywhere’.

Amy and I were still grappling with the task of fighting for her to go home … soon please. The issue was how to usher her toward death with as little pain as possible. The oncologists were done; the chemo had not been up to the challenge and they were there to offer pain medications and the expertise of checking on her vitals only, and that meant staying in the unit. The radiologist was then tasked with choosing whether or not photon therapy would offer immediate relief, and if so for how long would it be needed. Regardless, it was easier to go to and fro the UW photon clinic in an ambulance than it was from home. Result: we couldn’t leave yet.

But Stella Blue was beginning to speak of home with consistency and urgency. Her bed, her cat Spunky, home.

It didn’t seem possible but right in front of our eyes our daughter had gone from back to school energy, back to life energy, to wasting away by way of everywhere-cancer and the pain medications dumping into her body through the port in her chest, and it seemed to happen overnight. She had energy yet but it was sparse.

The oxycontin and dilaudid weren’t enough and the doctors agreed morphine would be the next step.  But the oxy had done its job causing, among other things, constipation. And because the cancer was now in her pelvic bone, she was being impinged further and hadn’t had a bowel movement in almost 10 days. Lastly, though her only sustenance was through the NG tube there was still enough waste to add to the pain.

We hit the most powerful combination of despair and physical trauma around noon on this day. After prunes, Miralax and other laxatives failed we went for the suppository. Stella was furious and embarrassed but the nurses and doctors agreed we needed to try it.

Gathered in her room, one of the sweet nurses holding the offending solution, Amy on the side Stella was turned toward, myself on the other side, we did the deed. It was a horrible, painful moment; cruelty upon cruelty. She screamed and cried until exhausted she fell asleep.

This is a memory altered, surely.

When she woke only a short time later the relief came with a new bout of pain so extreme, she rose from the bed to standing as if lifted by another force.

I remember it clearly.

Standing by the side of the bed her scream reached a peak that seemed to circle around to near elation…it was the stuff that breaks minds to watch. She was covered in body happenings after an 11-day battle with her bowels but, at least this moment, she had achieved a tiny fraction of a victory. She looked across the bed at me and said:

‘That was an 11!’ her face wide with almost a smile, a depleted, half-crazy smile … not fake smile, but a Stella making the best of things smile and relief from the new sensation of absolute pain having just passed. Standing there at the side of the bed, naked from the waist down, leaning on her mother, a tall, tall girl of 14 with all hell breaking around her…and she was now smiling through the tears. And she had just made a joke about Spinal Tap, a movie she’d never seen but heard us reference often.

We needed to shower. Halfway through our staggering trip from the bed to the bathroom - staggering body, staggering situation, staggering pain - 16 steps total maybe, she turned to her mother, looked her straight in the face and said these words: “you can bend but you can’t break’, again with almost a laugh.

She knew how hard it was for us; she knew we were in pain; and she needed us to know we were not allowed to break now.

We showered off the slender, lower half of her body; bottom, legs and feet, wiped her down with the cold hygiene wipes, warmed her with a towel, pulled one of my work t-shirts over her head (it was the blue Stewart Lumber one … don’t know where it went) and wobbled back toward the bed. Once there she rested a moment while Amy arranged the pillows and blankets to be just so. I stood by Stella’s side, holding her left arm, rubbing her skeletal back. Her head hung from exhaustion, her hands planted on the mattress, feet spread wide for stability. And lifting her head she said to me, with a whisp of humor and in a tone, I’d never heard before, ‘hit me in the head with a baseball bat.’

This is a quote I know to be true.

And she still didn’t know her fate. It was the next day, February 2nd, that we told her.