January 31, 2018: In The Moment

January 31, 2018 marked Matt’s fifth full day in hospice. Five days of sitting by his bedside, of measuring breaths, of helplessness and hopelessness, and waiting to wake from a nightmare. Five days of reflecting on all the things we had done and all the things we hadn’t had a chance to do. Five days of not knowing whether there would be a tomorrow.

There isn’t much left to write about these days. When I undertook this project more than three hundred days ago, I knew that there wouldn’t be much to say during hospice week, this week when there was nothing left to fight for and time all but stood still. There were funeral plans to make and logistics to configure, but I didn’t—couldn’t—make those plans or configure those logistics. Those kinds of decisions—about the casket and service and rabbi—I knew would simply shatter the fragile strength I’d summoned to make it through these weeks.

Maybe it was a kind of cowardice. Maybe it was my final act of denial. Or maybe it was simply survival, self-preservation. But, save for confirming that I wanted all of Matt’s friends—near and far—to come to his service and shiva, I couldn’t allow myself to see past the moment we were in. For twenty months I’d done nothing but look ahead, either waiting for the other shoe to drop or for the next upswing to sweep us back into a place where we could breathe, but now I couldn’t see beyond that quiet, sunny room.

And I didn’t have to. As I had so many times during the previous twenty months, I found myself grateful for the people who surrounded me. Because when I didn’t have the strength, Matt’s parents took over planning the details. They found a reserve of strength to make those decisions that I couldn’t, and in doing so, they gave me the gift of living in the moment with Matt beside me, rather than looking into that bleak future. It’s a gift I don’t think I could ever repay.

One year ago today, I didn’t know it would be Matt’s last Wednesday. I didn’t know we had three more days left. And I didn’t know how we (G, H, and I) were going to survive, if we even could survive a life with a Matt-sized hole in it. A too large part of me wasn’t sure we could.

Yesterday, I took G and H to the art therapist for their weekly appointment. The therapist invited me into the room and we decorated rocks to place on Matt’s headstone when we visit on the 3rd.  I don’t know that I’m allowed to share what G and H wrote on their rocks—I didn’t ask and wouldn’t want to assume—but the message H wrote to Matt, the thing he wanted his dad to know most of all after a year in Post Hope, confirmed that we had done more than survive this first year. And I don’t think that’s a betrayal to Matt. Instead, I think, maybe, that’s what Matt would have hoped for. If he knew he couldn’t be with us, if that wasn’t an option in this lifetime, then I think he would have hoped that we did more than survive. I think he would have hoped for us to thrive.

January 30, 2018: Without The Glow Of Hope

The letter I wrote to Matt on January 30, 2018 was short, a scant six lines and ninety-seven words. And every time I read it, my heart hurts for that last year version of myself. Because I remember too well the moment that sparked this letter and I remember too well the way the sound of Matt’s breathing made it hard for me to breathe and how every moment began to feel like a grim vigil.

One year ago today, I referred to Matt in the past tense while I was sitting right next to him. As a writer and a reader and a lover of language, I felt the significance of my mistake reverberate through me for hours. Matt was still here, still with us, and I used the past tense. Could there be any greater betrayal? In my mind, the answer was a definitive no.

So I wrote to Matt and I apologized for this final betrayal, those words, which were all but the admission I’d been afraid to speak aloud: that I didn’t have hope he’d wake up, that I recognized our eleventh hour miracle wasn’t coming, that I couldn’t manage to scrape up any more hope for him.

I apologized for those words and I apologized for not finding a way to have hope, even when there was no hope to find. I apologized and told him he deserved better than hopeless.

In many ways, the next few days were the hardest of any in our twenty month battle. Without the glow of hope to look toward, there was nothing to fight back the dark truth of this terrible disease.

I didn’t write to Matt again until February 4th.

Instead, I read others people’s words. A few days earlier, I’d posted our story—Matt’s story—to the brain cancer forum. For twenty months, I’d been reading the stories posted on the brain cancer forum boards by anonymous strangers, looking for ways to distinguish our story from the saddest endings. When it became clear that our story would have that saddest ending—whether in weeks or months—I added my voice to the many already posted. What I received was an outpouring of support from strangers who read Matt’s story—all of it, from his first successful surgery to the recurrence we treated with poliovirus and the swelling we combatted with Avastin and the third tumor that disappeared under gamma knife radiation…the hydrocephalus and the shunt and the vision loss and the leptomeningeal disease and the final, desperate surgery and the devastating final MRI—and understood too well the mix of despair and disbelief and exhaustion and grief.  What I found while reading the comments from people who had walked a path like ours—not identical to ours, but close enough—was compassion. And what I hoped, while I spiraled into a place where hope was nothing but a memory, nothing but a lingering curl of smoke where an ember used to burn, was that the story I wrote would one day give hope to someone else—either because she’ll find a way to distinguish her story from ours or because she’ll know she’s not walking this path alone.


January 29, 2018: Quiet Hours

January 29, 2018 marked my first quiet morning with Matt. I’m not sure exactly what I did while I sat with him for those hours. The next five days are a blur, one day fading into the next. Sometimes I played music—our wedding song always at least once—sometimes I put on an audiobook for us, sometimes I gossiped and chatted about nonsense and filled him in on G and H, and sometimes I sat in silence listening to him breathe and measuring his breaths against my own.

Days earlier, the neuro-oncologist had suggested inpatient hospice over home hospice so I could simply be Matt’s wife again, and I hadn’t understood what she’d meant. But during these days in that quiet sunny room, I understood. For the first time, there were no tests to schedule or results to learn or doctors to badger. For the first time since June 6, 2016, I sat with Matt and I didn’t feel the stress of needing to keep running, keep moving and fighting. He was safe and he wasn’t in pain, and there was nothing for me to do but sit with Matt and let the rest of the world spin around us.

It’s a strange feeling to stop after so many months and days and hours of going. It’s a strange feeling to sit in a room and not hop up at each sound or think about the next moment or the one after that. To sit and be. Friends often texted me to ask if I wanted company during these solo hours and most of the time (some might even say all of the time), I told them I didn’t. It had been a long time since I’d been able to sit with Matt and just be. And a part of me was grateful to get these moments again—these moments to be  with Matt without expectation, without willing him to be someone he couldn’t be anymore—even as I kept waiting to wake from this nightmare. The final contradiction of brain cancer, I suppose.

At some point in the afternoon, the nurses came in to help move Matt’s position. Rather than asking me to leave the room the way they had when G and H had been with me, they allowed me to stay. Matt’s eyes fluttered open for a fraction of a heartbeat. The nurses said it was likely only a reflex response, but nevertheless, when they left, I put my hand into Matt’s and squeezed, and—maybe I imagined it, maybe you can talk yourself into believing all sorts of things when emotions are running high and sleep is running low—but I was sure I felt a squeeze back.

When it was nearly time to pick up G and H from school, I told the nurses I was leaving for about an hour and I’d be back with the kids. The words came out with more emotion than I’d expected. And the nurses somehow understood. They told me that if anything happened while I was gone, Matt would know I was only not with him because I was taking care of his kids. And it gave me a kind of peace to believe that—to hope that on some level Matt understood I was doing my best to be in two places and be two people—his wife and G’s and H’s mother—and that he’d want me to be there for G and H, as much as they needed.

That night, I helped G and H with their homework on the floor beside Matt’s bed. We talked about their days as we ate dinner cross-legged, plates on our laps, on the couches and chairs surrounding Matt. Matt remained comatose—I still don’t know whether coma is the official word, but asleep doesn’t feel significant enough—but we were together. And it was easier to breathe when the four of us were together. It was easier to just be when we were all together.

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.


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.