January 28, 2018: Strength of Conviction

The day was full of family. By early-afternoon, Matt’s room was awash in light and love and even a little laughter. In addition to me, G, and H, Matt’s parents, his sisters, his old family friends all came to sit with Matt for a little while. And, though we’d been holding off on allowing visits from anyone outside of family until Matt woke up—if he woke up—two old friends from the city arrived; their visit was a surprise and a reminder of a life that was little more than a memory and an origin story that was becoming more sacred by each passing second.

As the hours passed, the absence of Matt’s voice, his laugh, was unmistakeable; the sound of his labored breathing was unmissable. And the reverberation of G’s innocent hope was heartbreaking. She so desperately wanted Daddy to wake up one more time, and it was impossible to not want that for her. But, even as I so desperately wanted to cling to that hope for her sake, by the end of the day, I’d begun to lose hope. Save for that eleventh hour miracle, one year ago today, I stopped believing Matt would wake up, even for G—our miracle baby. And I crafted my last theory to explain the unexplainable, to explain why he so suddenly–because it did feel all too sudden–couldn’t wake up.

Matt’s tumor was vicious. Every victory was met with a stunning defeat; upswings were followed by downswings that reached new depths. Every time we thought we could breathe, we were deprived of air. For twenty months, we’d had one crisis after another. And while I worried and stressed and researched, Matt remained true to this singular conviction: he believed he would get better. So each time, after each stunning defeat, Matt stood back up, and each time he defied expectations, and each time the doctor told him he looked too good for a person with disease as widespread as his.

Until the disease knocked him down this last time. Until that invisible monster had been revealed in all its horror on the spinal MRI. Until the doctor said weeks and I signed hospice papers in a chair while Matt slept in the bed beside me.

Even though we (Matt and I) had never had that particular hard conversation, maybe some part of him knew the truth about the spinal MRI and hospice. Maybe some part of Matt had known for a while the truth the doctors would find in his spine and that part of Matt had fought, desperately, with every ounce of his heart and soul, to deny that truth. But once that truth was discovered, once those papers were signed, that part of Matt that had been fighting so desperately, could finally stop fighting.

My unprovable theory is this: Matt’s strength of conviction—his belief in the elusive idea of our future, our happily ever after—was the reason he defied those expectations and looked too good for a man whose disease had so viciously progressed. Matt’s strength of conviction is the reason the hope in this story burned bright and true. Matt’s strength of conviction is the reason we soared when it would have been easier to crawl.

January 27, 2018: Small Hopes and Delusional Hopes

January 27, 2018 marked Matt’s first full day in hospice. The night before, after that hard conversation, after tucking G and H into bed wondering whether they’d get any sleep overnight, I wrote. But this time, the letter that I wrote wasn’t to Matt. This time, I wrote: to friends—Matt’s college friends, high school friends, and our city friends—to G’s and H’s teachers; and to our community, the circle of friends who’d stood by with playdates and carpools and daily reminders that an army was standing beside us. I wrote to tell them that we had nothing left with which to fight this tumor, I wrote to tell them that our most recent effort—brain surgery—was relatively successful and still the invisible monster got the better of us. I wrote to tell them the doctor believed Matt had weeks remaining. Some part of me envisioned weeks of visitors, a stream of best friends and old friends coming to spend time with Matt, to bring out some of whatever was left of the real Matt. I imagined sunny afternoons during which Matt found a little joy. Of course, the cruelty of brain cancer—those visions never came to pass.

When I woke up on the morning of the 27th, I woke up to notes from friends near and far. All those friends that Matt had managed to keep in his orbit over his forty years, all of them reached out, a network larger than I could have imagined. There was shock and sadness, of course, but even more so, there was an outpouring of love and dozens and dozens of stories about how Matt had changed their lives—from childhood shenanigans to first jobs.

So many people wanted to visit, but two things had to happen before anyone outside of our immediate family could visit. G and H needed to see Matt. And Matt needed to wake up. When I called the nurses at hospice on the morning of January 27, 2018 for an update, they told me that Matt wasn’t yet responsive. Worry began to bloom in my stomach—G had her suitcase of mementos packed, both kids drew pictures and wrote notes, they had so many plans for the real Matt—and I could only hope. Hope that they had the visit they wanted and needed. Hope that Matt woke up for them. Hope that if he woke up, he was a version of himself that they wanted to see. Small hopes in a time marked by hopelessness.

Before we went to the hospice, G, H, and I started the day with art therapy. The art therapist was well aware of the conversation I’d had with them the night before and spent their sessions working on helping them identify and understand their feelings. One of the emails I’d received had been from H’s teacher, who’d mentioned that H had been more physical in class, angrier. When I told the art therapist, she said she knew—all of the pictures he’d drawn were marked by dark reds and angry volcanoes; it was eye-opening to see how H’s feelings, which he couldn’t verbalize, came out through art. Eye-opening and heartbreaking. He was entitled to that anger, but that didn’t mean I didn’t wish I could bear it for him, save him from it. For twenty months, Matt and I had tried to shield G and H from the worst of it by any means possible, and now nothing stood between them and the truth.

We spent the rest of the morning and afternoon with Matt. G and H read him their notes and watched Netflix on the spotty Wi-Fi connection. When Matt’s parents came, we all sat together in that sunny private room and talked, swapped news and stories, played game after game of Uno and Tic-Tac-Toe and Hangman, the way we would have if we’d been sitting in our living room on a snow day. Matt slept through it all, breathing deeply and lightly in turn.

When Matt’s parents took G and H to dinner, I sat beside Matt and wrote to him. I wrote about telling G and H every truth I knew–that Daddy won’t be coming home or getting better. I wrote about how I spoke those words and instantly wanted to take them back, because what if. What if we had that eleventh hour miracle?

Even though I knew I was supposed to stop hoping, I couldn’t. After twenty months of hoping, hope had become a way of life, as natural as breathing. Not hoping was as impossible as picturing a future without Matt.

So I hoped. Small hopes and delusional hopes, but hopes nonetheless.

January 26, 2018: Regret

One year ago today, Matt left Columbia by ambulance to head to the hospice in New Jersey. Days earlier, while I’d debated between inpatient and home hospice, Matt’s father and I had visited the location. It was quiet and peaceful, and the people were kind and warm. It would be the place where we (G, H, and I) would spend the majority of our hours for the next eight days. Matt had a large private room at the end of the hall with an expansive, east facing window and a view of the courtyard. It was a room filled with sunshine, without the shrill shrieks of hospital machines and other patients.

Matt’s transport was supposed to leave at 10 a.m. That had been the plan. I knew hospital plans were always subject to delays—nothing ran on time; I’d learned that lesson a hundred times in the twenty months since Matt’s first brain surgery. But somehow, for some reason, I thought in this, for this, the timeline would hold. 10 a.m. would mean 10 a.m., if only because Columbia needed Matt’s space for another patient.

I’ve written about regret a handful of times. The regrets have always been minor. But I’ve hinted that there is one regret in this story that isn’t minor, that has haunted me for nearly a year.

On January 26, 2018, believing that Matt would be transported at 10 a.m., believing that meant he’d be in his new room by about 11 a.m., I made a decision. I decided not to drive in to Columbia in the morning. I decided to pack pillows and blankets, picture frames and stuffed animals, anything that might make Matt feel at home and feel surrounded by love. And then, I took ten minutes.

For ten minutes, I laid down in a patch of sunlight slicing across the playroom floor. I laid on my back and let the truth of the word “hospice” sink in. I stopped running on auto-pilot and let tears roll down into my hair. I let myself feel tired and scared and sad. I let myself break down and fall apart—because I knew I wouldn’t give myself the chance again. That afternoon, I’d have to have a conversation with Matt, try to explain to him that we weren’t fighting anymore and hope he understood. That night, I’d have to talk to G and H, explain the word hospice and tell them their father was dying. And I couldn’t fall apart for any of that. I knew G and H would need someone to hold on to while they fell apart, they would need a steady presence to cling to in order to keep them from disappearing into that darkness. And also, I took ten minutes because a part of me couldn’t quell the belief that had crawled in the day before—that Matt didn’t want me there. Because his anger had found its way to me so many times, I couldn’t help but believe he’d have a better morning without me.

And I’ve regretted those ten minutes for so long. Because instead of being with Matt for his last hours awake, I fell apart. When he needed me to be strong, I couldn’t be anymore.

After those ten minutes, I drove to the hospice. I remember pushing the button and riding up the elevator; I remember opening the doors to the hospice wing and walking down the hall, carrying bags of supplies, while trying to keep my head up. I remember setting up his room. Picture frames and drawings by G and H on the windowsill, his pillow and blanket on the bed, clothes in the closet, food in the mini-fridge.

And then I waited. And the hours rolled away and each time I called, I heard that Matt hadn’t left, but he’d be leaving soon. And I was paralyzed by indecision–analysis paralysis. If I drove into the city now, I might miss him on the way, and then I wouldn’t be here when he arrived. So I waited. And badgered the nurses at Columbia one last time.

When Matt arrived, so much later than I’d expected, he was asleep. Matt didn’t wake as he was transferred from stretcher to bed. The nurses speculated that Columbia had given him a high dose of pain killer for the ride, and he’d probably sleep through the night. I stayed with him until his parents arrived—never having a chance to explain where he was—and then I went home to G and H, to have the hard conversation I’d been dreading all day.

I had worked with G’s and H’s therapist on what to say. True to my diligent student nature, I took notes during that phone call and then referred to the paper while I talked to G and H. We talked about hospice and what it meant; I told them that unlike a hospital, they could visit for as long as they wanted in hospice. And because I didn’t know Matt wouldn’t wake up again, we talked about the things we could still do as a family, the moments we could still share.

In retrospect, I think they’d known something was very, very wrong for weeks, and the not knowing had been harder on them, had caused them to act out. Once they knew, even though the news was devastating, they could begin react, in whatever way they needed to. For G, that meant crying and packing a suitcase of things to bring to Matt in the morning. For H, it meant taking a breath and saying he was sad, but that he wasn’t going to think about it. Afterward, we (G, H, and I) curled up on the couch together and watched T.V.—though I can’t even begin to guess what we watched. Something about G and H felt settled that night—sad, but calm, and I realized that it was true when people say kids perceive more than we believe.

Regret can be a poison. Regret can be its own invisible monster that corrodes and destroys. And for a year, I’ve been working to forgive myself for those ten minutes, for making that bad decision. I’ve tried to convince myself that I couldn’t have known that morning at Columbia would be Matt’s last awake hours—just the day before I’d believed the doctor’s prediction of weeks had been too dramatic; Matt had been so alert, so clear. Later, after February 3rd, when I spoke to Columbia’s neuro-oncologist, she said Matt had been awake when he’d left—she’d hedged, hesitated, and I got the sense she wanted to protect me from the details—but she’d been stunned to hear he hadn’t woken up when he arrived in hospice. Matt was always surprising us.

I will probably always wish I’d made a different choice one year ago today. But also, I will always be grateful the choice I made allowed me to have the strength to set up a room, which, in retrospect, was as much for G and H as it was for Matt; to stand strong beside Matt and be one of the first voices he heard in hospice, even if not consciously; to be the steady presence G and H needed when their world flipped inside out.

Regret is a part of this story. But maybe it’s only a poison if you let it be.

January 25, 2018: Last Words

The choice that I was faced with on January 25, 2018, and the decision that I made, was nothing short of a choice between two jagged halves of my cleaved heart. Inpatient hospice or home hospice?

Every piece of my heart wanted Matt home with me, wanted Matt to spend every single one of his last seconds in his home, surrounded only by people who loved him, who understood the great loss the world would experience when he left. And also, every piece of my heart wanted to protect G and H from the things I’d seen and heard in the last few weeks—the bowel and bladder dysfunction, the anger, the leg spasms, the confusion, the broken spirit. They’d seen so much already but they should not see it all in their home, without the filter of a medical setting.

So often over these last months, I’ve written about the need to be in two places, the struggle in choosing between Matt and G and H, being a caregiver and a mother. This choice felt like the culmination of that struggle. And how was I supposed to choose?

I sought out advice everywhere. From the doctors, the kids’ therapist, family, and friends. The answer was the same every time. If Matt was Matt, the real Matt, what would he want? We’d never talked about it, so I could only guess; I could only fall back on my own gut instincts and the thoughts of the family and friends who knew and loved him.

Ultimately, I chose what I chose for this reason: Every decision we’d made since June 6, 2016 had been to protect G’s and H’s future, their hearts; and ultimately, I fell back on that question. What would protect G and H? What would give them a semblance of peace?

With the heaviest heart, I chose inpatient hospice. And I worried I was failing Matt, abandoning him. But one year later, with the benefit of hindsight and the clarity that comes when the fog of those worst days lifts, I know I was wrong in that worry. The decision I made one year ago today was not a choice between Matt and G and H. It was a choice for them, for all of them. A choice to preserve G’s and H’s memories, their hearts, and their innocence, and a choice to protect Matt by giving him the peace of mind in knowing that his children, to whom he would have given everything, didn’t have to live a life haunted by the worst moments. It was the right choice for our family in those moments.

One year ago today, after attending a presentation in G’s classroom—a blur of moments and pretending to be a whole person with an unbroken heart—Matt’s mom and I drove over the George Washington Bridge into the city. Again, Matt mostly slept and I didn’t tell him what was happening in the moments he was awake. Not yet. I hadn’t worked up the courage, yet. We—I—signed the papers for hospice and arranged for Matt to be transported in the morning.

Matt woke in the late afternoon when his cousin came to visit. He sat up, had a relatively normal sports-centered conversation, and ate a Wendy’s spicy chicken sandwich. He seemed almost—kinda sorta unbelievably—clearer, somewhat back to himself. Hours earlier I’d signed hospice papers, and now it seemed improbable that I would have done that, that the doctors could have said only weeks remained. That amazing brain.

Matt asked me to help him with chapstick because his lips were dry and cracked. I found the chapstick and unscrewed the cap. I put it to Matt’s lips—and he flinched, he yelped in pain, and I pulled my hand away as if I’d been scalded, or as if I’d scalded him. The doctor had told us that because of the tumor in Matt’s spine, the tumor surrounding all those nerve endings, he’d likely have a lot of pain all over; our challenge would be to keep that pain under control. Matt snapped at me and said something inconsequential that I don’t even remember. But I remember the way it stung—something that maybe once I would have seen as teasing, but too many paper cuts had made me too sensitive. I was terrified to go near him after that. And I remember the horrible thought that had raced through my mind: I wasn’t making Matt happy anymore; I was making things worse when I desperately just wanted to make things better.

That night, when we (Matt’s mom and I) left Columbia, I knew it would be for the last time. In the morning, Matt would be in hospice in New Jersey.

I did not know, when I walked away from Matt convinced that the doctors had once again underestimated him, that it would be my last chance to talk to Matt. I did not know or think to pay attention to the last words he said to me before we left.

I’ve spent a year trying to remember his last words, trying to remember if I said “I love you” and if he said it back. I’ve spent a year trying to remember and I simply don’t know. I have to hope I did and he did. I have to hope that if I didn’t, he knew it, anyway. I have to hope that maybe last words aren’t as important as the millions and millions of words that came before. Once, Matt thought we were perfect. I have to hope some part of him never forgot.

January 24, 2018: Weeks

One year ago today, with hope all but burned away, Matt’s dad and I drove to Columbia to meet with the doctors, to see the final MRI, and make our last decision about treatment.

Matt slept through most of the day, waking only long enough to take a pill. We didn’t tell him what the MRI had revealed; we didn’t say that we had no weapons left in our arsenal to fight back the invisible monster that had finally revealed itself completely. I knew we would have to have that conversation soon—and it would be a wholly new kind of heartbreak. But not yet. Not until I saw the MRI. Not until I saw the truth for myself. And maybe that was a kind of cowardice, but I simply didn’t want to break what was left of Matt’s spirit.

The doctor walked into Matt’s room around two in the afternoon and beckoned us (Matt’s dad and me) to a private conference room. Private, because it was walled off from the rest of the hospital, but those walls were made of glass and we had a clear view of Matt’s room’s doorway and the nurses watching over him. They had a clear view of us, too.

The doctor pulled up Matt’s most recent MRI. And the images will haunt me forever. I will never forget the impossible angle of his neck. The flare of disease in the space between vertebrae. The glow of white that shouldn’t have been.

For nearly twenty months, there’d been a question I avoided asking. But one year ago today, I asked. I asked, even though I didn’t want to hear the answer, even though asking confirmed that I’d lost hope in our happily ever after. I asked: how long.

Weeks. The doctor’s voice cracked on the word.

And the tears flowed. Hers and mine. Because Matt had fought so hard and because he was so funny and smart and charming and because she’d become more than a doctor; she’d become our partner.

That afternoon, we officially agreed to stop treatment, to stop putting Matt through radiations and chemos, to get him out of the hospital and let him spend his time, his weeks, with his family. It was time for hospice, a word I’d only read in the brain cancer forums, a word I never imagined would apply to us.

We’d made so many choices during our twenty month battle. Where to go for treatment, which doctor to trust, which treatment to pursue, and on January 24, 2018, we had one more choice; the choice became one between in-patient hospice or home hospice. And like every decision in this story, it wasn’t uncomplicated and now needs its own space, its own separate post.

That night, I walked into the house and found my mom waiting for me by the door. I’d barely made it through the doorway before I fell to my knees. The weight of the day was just too much to carry and I couldn’t anymore. And I didn’t know that I’d be able to anymore. My heart, which had been shattered and patched together too many times before, was simply broken. But there was no choice. G and H would be home soon from friends’ houses and activities, and they couldn’t lose me, too.

So I stood. Which wasn’t an act of strength—there was nothing strong about walking over the jagged shards of broken heart, letting pain infuse every step. It was an act of necessity. I stood and made dinner and tried to figure out how this could be real life. Because it didn’t feel real. To be honest, it still doesn’t feel real. One year later, all these posts later, I still sometimes say “we” when I mean “I,” still sometimes start a text to Matt with a funny meme I saw, still often wonder how and why.

In the next few days, there will be hard decisions and hard conversations. There will be mistakes and regrets and heartaches—too many heartaches. But there will be something else, something that burns as true and bright as hope once did.

January 23, 2018: The Last MRI

There’s no warning before the moment hope extinguishes. There’s no signal or hint that the life you’ve been desperately clinging to is about to shatter. There’s only that moment, that second, and then everything will always be divided into a before and after. A Hope and Post Hope.

January 23, 2018 is the day the sky burned and the last ember of hope extinguished.

Earlier in the day, the stars had aligned. A spot had opened up in the MRI schedule at the same time that Matt’s anger settled. He was finally taken for that full spinal MRI. When the results arrived, the nurse in charge of Matt for the day couldn’t tell me what the radiologist had found—and that should have been the first warning. She would only say that the doctor wanted to speak with me—a second warning. I tried to charm the nurse, suggested she just leave the radiologist’s report out on the tray and I’d just glance over it when she walked out of the room. She’d smiled kindly, indulgently, and said I looked too young to be married. I told her I appreciated that, but I didn’t feel young and we were going to celebrate ten years this year.  And, for some reason, the nurse paused then, rather than walking out the door. She paused and sighed and said she wasn’t sure what the radiologist’s report said, but she thought they (whoever they were) had maybe found something at the top of Matt’s spine. But she cautioned that I should wait for the doctor to confirm.

I took her advice. I very carefully, very purposefully, pushed away the nurse’s reluctant words. I should have known better than to ask for information without context, anyway. I’d learned early into this process that context mattered more than test results.

Because I’d promised G and H that I would be home for their afternoon, when Matt’s mom arrived to spend the rest of the day with Matt, I secured an assurance from the nurse that the doctor would call me and I left. I picked G and H up from school, drove them to activities and playdates, and listened to stories about their day.

The doctor called sometime between 4:30 and 5 when I was on my way to pick up H from a playdate. I pulled over in the parking lot of a pizza place not far from the friend’s house and conferenced in Matt’s mother. And then the doctor began to talk, her voice low and somber. And while I listened, while I listened to the words that destroyed that last glimmer of hope, I stared up at the sky, the setting sun and the clouds that looked as if they were being devoured by flames. I remember thinking, absurdly, that I should take a picture of this, because this is what it looks like when the world ends.

Afterward, I wiped away the tears and somehow put the car into drive and drove down that tree-lined street that was settling into darkness. I somehow knocked on the friend’s door and apologized for being late and listened to stories about H’s playdate. I somehow picked up G and drove home. Somehow cooked dinner and helped with homework. Somehow read a bedtime story and tucked in two kids. I remember feeling numb, disconnected from myself, but aware enough to realize these emotions were too big to be felt all at once by one person. I didn’t text or call anyone for hours. Because I didn’t have any words nor did I have the capability to process the doctor’s words, that final truth. This final truth: The MRI revealed that the cancer had spread; not just onto Matt’s spine, but into the bones of his spine, throughout his entire spine.

The doctor had given us a choice: do nothing or go forward with that small dose of radiation to his lower spine. But either way, our fight was over. Either way, the last ember of hope had burned away.

Now, like then, I’m not prepared for this moment. I should be—in many ways, this post was a year in the making. And yet, it seems to have snuck up on me again. Maybe because January 23, 2018 feels like a lifetime ago. Maybe because no matter how many times you re-live some moments, you’ll never be ready for them. Maybe because I’ll always hope for a different ending because this ending still seems impossible.

So I’ll end today’s post with this:

That night, one year ago today, I sat to write another letter to Matt. I wrote about memories that are like snapshots of moments and wondered whether it was possible to pinpoint the day I lost him—his smile and humor and spark. And I ended that letter to Matt with this line: I hope when you fall asleep tonight, you dream of our life, and I hope some part of you remembers that, at least for a little while, we soared when everyone had told us to walk.

On January 23, 2018, the day I watched the sky burn as hope extinguished, I wrote the words “I hope.”

As I’ve said before, I’m not writing simply to tell a tragic brain cancer story. I’m writing to tell a story of a hope that persisted, even though in the moment, I had believed it to be destroyed.

img_2436

January 22, 2018: One Last Hopeful Night

January 22, 2018 is the date of the last text message I ever sent to Matt. At 8:50 p.m., after G and H had gone to bed, I wrote: You awake?

The text seems insignificant—two words strung together without a linking verb to form a complete sentence—and yet, this text might be the most hopeful of all the texts and words I’ve ever typed. Because Matt hadn’t properly texted me in over a month and nothing in his day would have made me believe that tonight would be the night he’d pick up his phone to check his messages and respond. And yet, I texted and watched my phone for those telltale three dots. That hope, that what if question: what if tonight there was some improvement?

It had been another difficult day at Columbia. The full spinal MRI had been put on hold indefinitely because the doctors were concerned Matt wouldn’t remain still in the MRI. That snap of anger, that spark of frustration, had reached his interactions with doctors and nurses and they didn’t believe he would cooperate for the hour long test. The plan was to taper his Dex, again, and hope for a chance the next day.

Nevertheless, as expected, rumblings of discharge began to filter into the doctors’ discussions. Save for the spinal MRI, Matt needed no further hospital intervention—and a MRI wasn’t a reason to keep him in a hospital setting, particularly when patients were being turned away at the door from the ER. A MRI could always be done as an outpatient procedure at some later date when Matt’s cognition improved.

We (Matt’s parents and I) wanted Matt to receive the help he needed to begin to regain his strength–physically and mentally– and to return, at least in some small part, to himself. Nothing else mattered. However, no rehab would accept Matt in his current state—confused and agitated and off-balance. No rehab would accept Matt because he needed too much care and the hospital wouldn’t keep him because he didn’t need enough care.

I began to consider the logistics of Matt coming home. I’d need help–experience had taught me too well that I could not be a mother and a caregiver at the same time. And without a doubt, we (Matt and I in our forever home) would need a hospital bed of sorts on the first floor to save Matt from having to use the stairs twice a day. When I mentioned the idea of a hospital bed to Matt days prior (the day he’d fallen at our home), his reaction had been to let me know he’d throw any hospital bed out the window. But this time, his reaction was muted, almost indifferent. Which I know frightened me more than his anger. Because if we were fighting, if that’s what Matt wanted to do, his heart had to be in the fight. If his heart and soul no longer had the energy to fight, then we’d already lost.

Maybe that’s why I texted Matt one year ago today. Not because I hoped for an upswing, for a Matt-like response—a splash of humor, a complaint about the food—but because I was hoping for a spark of fight, for confirmation that his strength of conviction was still in place.

Maybe I just wanted a reminder that we were still on the same team.

One last hopeful night.

January 21, 2018: A Day Apart

On September 10th, I wrote that Matt and I would only spend three days apart from that day forward. January 21, 2018 marked that third and final day. Matt had been in the hospital for a full week. I’d been racing back and forth, splitting my time between Matt and G and H, which meant I was often relying on friends to help carpool and family to come babysit. It meant a disruption in G’s and H’s routine, despite all efforts to keep their days as normal as possible.

The disruption to routine, absent father, and inconsistent mother had begun to wear on G and H by January 21st. For too many nights, H had struggled to fall asleep and stay asleep. G and H had both started to act out in subtle ways that I knew meant they were struggling with too many big emotions. They needed a dose of normalcy and consistency. When Matt’s parents suggested I stay home while they go into the city, I took them up on their offer. I made that need assessment and decided that for this day, G and H needed me more.

And then I saw Columbia’s phone number flash across my screen. A nurse was calling to tell me that Matt had tried to stand up by himself and he’d fallen; he seemed okay, but they were taking him for an x-ray on his left shoulder and left hip just in case. I remember that fear and that guilt and that desperate wish to be in two places. I needed and wanted to be with G and H—to give them that dose of security and consistency they were missing—but I also needed and wanted to be with Matt—because it was easier to fight for Matt right next to Matt rather than worry about him from a distance. It was easier to feel in control of the storm while in the eye, rather than on the perimeter.

Matt’s parents arrived at Columbia shortly after the fall and confirmed Matt was unharmed. They took control (better than I would have) and made sure Matt had his x-ray and was assigned a spotter, someone whose sole job was to ensure Matt didn’t fall. The x-ray confirmed nothing serious had happened. But the fall had confirmed that Matt could not be left alone. He’d been unsteady at home. That unsteadiness had worsened, and he didn’t seem to possess the awareness to recognize it.

Matt’s parents and I turned our focus to rehab, to Kessler. The doctors hadn’t yet mentioned discharge, but we (Matt’s parents and I) knew from experience that the discharge conversation wasn’t far off. Medically, Matt was stable—he was confused and unsteady and agitated, but he wasn’t in need of hospital intervention—which meant the doctors wouldn’t keep him in a hospital setting.

But he needed more help than I could give at home. So acute in-patient rehab. The logic was that he’d done so well at Kessler once before—regained his strength and cognition so swiftly—that we could expect the same results again. It was sound logic. Or, we had believed it to be sound. We didn’t have all the information; Matt hadn’t yet had the spinal MRI.

Because one year ago today, the flu epidemic was raging. Columbia’s ER was turning people away without seeing them. It was a case of city hospital overcrowding to the nth degree and Matt’s MRI was simply not a high priority. He was pushed to the back of the line again and again in order to make way for more pressing cases.

The speed with which brain cancer destroys will never not leave me stunned. The speed with which we hit our final lasts will never begin to make sense. Matt’s last day at Columbia, his last text, his last words to me all happen within a week that started with a plan for rehab. This is how the week hope vanished began.

It’s the week hope vanished, but re-reading the letters I wrote to Matt, I know with absolute certainty that hope didn’t go without a fight.

January 20, 2018: Firsts And Lasts and Seconds

One year ago today, Matt spent his last Saturday at Columbia. Matt’s dad and I drove into the city together to spend the day with Matt who slept through most of the visit. It was easy in those moments to sit beside him in the quiet room with the view of the Hudson River and make a list of all the things I would tell him when he woke up, things about G and H, about my night out, about his next steps.

But none of that happened. The cruelty of brain cancer, I suppose. Because when he woke up, he was still angry. His anger from the day before carried over and he refused to listen to stories about the kids, about anything.

His agitation was warranted. He was on a high dose of Dexamethasone and confused. The surgery had brought back his language—the aphasia seemed to have somewhat resolved—but the general confusion remained. A doctor—or resident or nurse—arrived to test Matt’s cognition. The doctor asked Matt to show him what one might do with a comb. I knew exactly what the real Matt would say—he’d crack a joke that he didn’t need a comb, and reference the bald head (because Matt had kept his hair shaved since he lost it to radiation in 2016). But Matt didn’t do that. He furrowed his brow and tried to figure out what to do with the imaginary object in his hand. I kept waiting for the joke after the doctor showed him what to do with a comb—the joke never came. Those missing moments.

The doctor then turned his attention to me to ask questions about Matt’s timeline. For the first time in nineteen months, I couldn’t answer the questions. Up until then, I’d had all of Matt’s information stored in my memory: dates of procedures, dosages of medications, all of it. But suddenly, I faltered. I couldn’t remember what symptom happened when. Things had started to happen so fast, the incidents and symptoms, one on the heels of another, and I couldn’t keep track. It was another first in a time when the lasts were piling up.

Yesterday, I celebrated my birthday in Post Hope. The day was filled with friends and family, facials and Facebook posts. It was a nice day and one in which I couldn’t avoid the fact that Matt wasn’t there. As G had warned during her March birthday, “birthdays without Daddy are terrible.” The day wasn’t terrible—for me, usually the days leading up to a significant day are harder than the actual day—but it did bring a new kind of grief for G, H, and me. The grief of a second—for G and H, it’s the second time they’ve decorated the house for my birthday without Daddy, the second time they’ve needed help from aunts or grandmothers to surprise me with a cake because Daddy couldn’t, the second time they’ve been overrun with emotions they can’t quite understand. The grief of a second brings permanence, realizing the heartache isn’t going away just because you’ve made it through the firsts, realizing there’s still nothing to say or do to ease the harsh truth of an absence–it just is. And for those reasons, the seconds might be harder than the firsts.

But then, the seconds are also easier than the firsts. Not the contradictions of brain cancer, but maybe the contradictions of grief. Because the second time around, you know a dark day can be infused with the purest light; and even if the day is impossibly too hard, experience has taught that it’ll be easier tomorrow. The second time around, you know you are strong enough to do this thing you never wanted to do.

The story of post-Post Hope, which will officially begin all too soon, might then be the hollow ache of permanence, but maybe also the fortifying glow of perseverance.

January 19, 2018: Birthday

Brain cancer doesn’t care that your nerves are scrubbed raw. Brain cancer doesn’t care that your chest is so tight with stress and fear that it’s hard to breathe. Brain cancer doesn’t care that it’s your birthday and the one person who knows you better than you know yourself is all but gone and the person left in his place is viciously and viscerally angry with you.

One year ago today, I turned a year older. I drove to Columbia and arrived to find Matt awake, eating cereal and milk with his fingers, and still in the recovery ward—ward, not room. He had a bed that was curtained off on either side from other post-op patients who were also granted the same limited space. His bed, the one we’d waited a week for, had been given away while he went down to surgery, and now the hospital again had no space for him in the neurology ward. So he was trapped in the recovery ward, surrounded by the moaning and coughing of other patients, by machines that beeped and shrieked and squealed at unknowable intervals. I understood why he was frustrated and agitated.

But he was awake, and something in his expression was just a bit clearer than it had been before. Putting aside the lack of spoon in his cereal and milk, something about Matt seemed just a touch more with it. It was heartening to see. It was proof—not quantifiable, not even measurable—but proof, nonetheless, that the surgery had helped Matt come back to himself.

But the doctors and nurses warned it might get worse before it gets better. And their warning proved too true.

I offered him a spoon and that snap of anger was there. I should have known better—that high dose of Dexamethasone he’d been on for days should have alerted me. I put the spoon back down on the tray and sat beside Matt, curling into a ball on the chair beside him because there was little room for anything else. I didn’t expect Matt to know it was my birthday. Before surgery, he’d struggled to remember the year, and even if he was capable of remembering the year post-surgery, he hadn’t looked at a phone or television—he couldn’t know the date.

Then Matt needed to use the bathroom. Because he was hooked up to half a dozen machines monitoring his vitals, because he was in the recovery ward where the bathroom was out the door and around the corner, because he wasn’t in a private room with nurses assigned specifically to him, he wasn’t allowed to stand. I told him as much and tried to hand him the urinal the nurses had left.

And I should have known better. Because the words he said next, the things he said and did—

Maybe it wouldn’t have hurt so much if it hadn’t been my birthday, if I hadn’t walked in with the highest hopes of having Matt back. Maybe it wouldn’t have hurt so much if I hadn’t been so exhausted and stressed, if there hadn’t been a thousand still raw cuts that hadn’t scabbed over.

Technically, January 19, 2018 was my last birthday with Matt. But when I look back, I can’t help but think it was my first birthday without Matt. For the last few weeks, whenever friends or family asked what I wanted to do for my birthday, my body reacted before my brain. Tears burned behind my eyes and I had to swallow down that rush of emotion. It took weeks to understand the reaction, it took writing 301 posts, actually.

For 301 posts, I’ve been looking for the day I lost Matt, and I’ve noted that I may never know that day. And while I’m sure that’s true, one year ago today, after a successful surgery that removed 85% of Matt’s brain tumor, after walking into a crowded recovery room with the highest hopes, I think some part of me realized that I was still fighting for Matt and I’d already lost him.

I’d already lost the Matt who knew that sometimes my birthday felt complicated, who made my birthday into an occasion with a capital O, who helped me throw ridiculous parties with names like Black Out or Get Out—not my finest confession, but we were in our twenties and living in the city, and I can’t tell a true story about Matt and Elaine without at least one reference to this ( epic?) party.

When I left Matt (who did get moved into a proper room on the neurology floor) for the night to be with G and H who wanted to celebrate my birthday with me, Matt’s sister met me in the Columbia parking lot. We drove home together and I was determined to keep the truth of my visit with Matt to myself. His family and friends were struggling enough and I didn’t need to add my heartache to that burden. But…I barely made it over the George Washington Bridge before the tears flowed and I told her everything.

That night, family surprised me. G and H decorated the house and we (a large family we) ordered in sushi. Afterward, a few friends invited me out for a glass of wine. I wasn’t going to go—my heart was too heavy; how could I even think about going out while Matt was fighting for his life—but I was talked into going, convinced into believing that I was allowed, deserved even, a night to breathe. I wasn’t sure that was true, but I went. One glass of wine turned into three (turned into a hangover the next morning). Matt, and the road we still had to travel, was in the back of my mind the entire time, but for a few hours, I could pretend I was nothing but another mom out for a girl’s night.

The world of brain cancer is full of contradictions. And here’s one more. January 19, 2018 was one of the worst days I’d known. It was a day when my heart broke and I couldn’t patch it over before the scar formed. But it’s also a day I’ve never felt more loved, a day so full of light I couldn’t possibly get lost in what was an entirely new and terrifying kind of darkness; there was too much light, too much love, and too many people who didn’t allow that to happen. I hope they all know how grateful I am for that light and love that saved me. And I hope Matt knew that light and love was always there for him, too, even when he couldn’t see it anymore. It’s a hope I will never stop hoping. It’s the birthday wish I’ll never stop wishing.