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.

January 18, 2018: One More Surgery

Sixteen days before February 3, 2018, we (the doctors, Matt’s parents, and I) made one last desperate attempt to bring Matt back.

When Matt’s mom and I arrived at Columbia in the morning, Matt’s room was already a flurry of activity. Nurses and techs and doctors were bustling around Matt, drawing blood, prepping for transport, recording vitals. The surgery wasn’t scheduled until noon, but everything was already happening.

I remember the moment when Matt was wheeled into his first resection. I remember when he was taken into the operating room at Duke for the biopsy and catheter insertion for the poliovirus. I remember when he disappeared behind the doors marked restricted at Columbia for the shunt implantation. Save for a few fleeting seconds in an elevator large enough for a hospital bed and walking in a slow procession behind the nurses and transport techs, I don’t remember the moment he was whisked away for this final surgery. I find that unbelievable, and I wish it wasn’t true.

While Matt was in surgery, we (the doctors, Matt’s mom, and I) planned next steps. The doctor ordered a full spinal MRI, just in case, and the radiation oncologist suggested a small dose of radiation—three days—to that drop of tumor on Matt’s lower spine in order to preserve bowel and bladder function. In my heart, I knew it was too much. Too much fighting for one person, for one heart and soul and mind. Too much radiation for a body to undergo. But, I agreed to the radiation oncologist’s proposal. Because this treatment was not intended to cure or heal, this treatment was meant to preserve bowel and bladder function. I agreed to this treatment with an eye toward Matt’s quality of life, his dignity. The logic was this: if the brain surgery worked—all that hope, balanced precariously high on a razor’s edge—if he came back and we got those few more years together, he would need his dignity. If nothing else, maybe I could preserve his dignity for him.

After a few hours of waiting, the neurosurgeon walked into the waiting room and told us the surgery had gone well. When I pressed him to quantify what he meant by well, he said he’d been able to remove about 85% of the tumor. It was a success; we should have been thrilled. And there was cautious relief, but the worry hadn’t eased. The neurosurgeon explained that we couldn’t go see Matt yet because he was still in the operating room; they (whoever they were) were having trouble waking him up from the anesthesia.

An hour passed and it felt like a lifetime, an eternity. As the minutes ticked by with no information, I began to badger. I called the recovery room—maybe the nurses had forgotten to tell us Matt was out of the operating room. I texted the neuro-oncologist’s nurse (who no doubt regretted giving me her phone number). No one had any information and the worry escalated. And though this is a story of hope, in those moments, I believed the worst. I believed the possibility that had been haunting us since the moment the MRI revealed the tumor had spread all throughout his brain had arrived.

I don’t know how to describe the feeling of trying to stand upright, trying to breathe when everything, absolutely everything, is hanging by the most fragile thread. All I could do was pace and swallow the fear and push away the looming breakdown, because I knew that if I broke down this time, I wouldn’t have the strength to get back up.

A little more than two hours after we spoke to the neurosurgeon, we got the notification that Matt was in the recovery room. His mom and I went to see him. He was sleeping when we arrived in the recovery room, but we learned he’d been awake in the operating room, had answered questions and known his name. The nurses expected he’d now sleep through the night without incident. More cautious relief, but still that worry, still that uncertainty–still too much unknown.

Today marks three hundred posts—more than 150,000 words—and a part of me didn’t expect it to be so difficult to write today’s post. I’ve written about other hard days, I’ve shared the details of breakdowns and meltdowns. But this day feels different.

Because, in retrospect, with that perfect 20/20 hindsight, this day should never have happened. If we’d known the truth of what the spinal MRI would show—the truth that no one could have guessed because Glioblastomas aren’t supposed to behave the way Matt’s tumor behaved; it was the absolute truth we’d been told back when we first learned the word Glioblastoma—I don’t think we would have gone forward with the surgery. I don’t think the doctor and surgeon would have even suggested a surgery.

But we didn’t know—it was too far outside the realm of possibility for anyone to even guess—and we made a choice with the information we had. We made a choice so that I could look G and H in the eye and tell them with complete honesty that we’d fought as hard as possible, that we didn’t give up while even a reflection of a glimmer of hope existed.

Maybe one of the hardest truths of the story is this: Matt’s surgery was measurably successful. 85% of his brain tumor was removed and the whole brain radiation stabilized his leptomeningeal disease. Whether Matt, the real Matt, had returned is a question that will be answered over the next few days, but by the numbers, by the scans, the surgery had worked, had bought Matt more time.

In the About Me page of this blog, I wrote that we didn’t lose Matt because of brain cancer; it wasn’t that simple. And that’s the story that’s left to tell.

I don’t know how many hours I slept that night. My guess is not many. But when I did sleep, I went to sleep knowing the road we’d now travel wouldn’t be easy. I went to sleep grateful knowing we (Matt and I) still had a road to travel, at all. Which is a heartbreaking truth, but also a testament to the amount of hope still left in this story; sixteen days before February 3rd, there was still so much hope.

January 17, 2018: Too Many Unknowns

G and H had a snow day on January 17, 2018. A school delay had been called the night before, and by sunrise, that delay had turned into a complete cancellation. Which was incredibly inconvenient on a normal day, and the 17th was far from a normal day. I couldn’t stay home and busy myself baking brownies and mixing slime with G and H. That need assessment—who needed me more. I needed to be with Matt, at Columbia, where the conversation with the neurosurgeon was ever evolving. By eight in the morning, the nurse had already called to tell me the neurosurgeon was looking to speak with me. As I had so many times already, I recruited family and friends to help with G and H so I could be with Matt.

I remember this drive into the city. The roads were mostly clear of snow, but visibility was terrible. Thick snow swirls made seeing anything besides the taillights of the car in front of me impossible. I was lucky, I think, that the roads were mostly empty. Because my thoughts were not on the road and the weather conditions. My thoughts instead remained where they were the night before: surgery or no?

Once, the decision might have been easy. Of course we’d do the surgery; of course we’d be as aggressive as possible and race down the path that offered the most hope. And, indeed, that was what Matt wanted to do. “Sure, let’s do it.” Those were his words. Evidence of his unwavering and unfaltering hope and determination.

But, I couldn’t say sure, let’s do it, as easily as Matt could. Because I knew there were too many factors, too many what if questions that I simply could not ignore.

In the letter I wrote to Matt on January 17th, I explained the maelstrom of emotions like this: You and I always rushed into decisions. Our first house. Our second house. When to have the first baby, then the second. We’d work each other up into this frenzy. Like, if we didn’t act right now, the window of opportunity would close. I have a decision to make now. We have a decision to make. You and me and your parents. Surgery or not–a limited resection to take out some of the tumor in the left parietal lobe, the one causing most of your problems. We can’t rush this one, but we have to. You’re all in. Sure, let’s do it. But I’m not sure you fully understand the risks involved, how weak you are right now, how injured your brain is. If surgery could bring you back even a little…but if you’re body is too weak and brain too damaged…if we do surgery and it doesn’t bring you back…if the leptomeningeal disease spreads…if the leptomeningeal disease responds to the radiation…if there’s tumor in your spine anyway…if there’s tumor in your bones anyway…I’m frozen in indecision.

There were too many unknowns, too many possibilities, and for the first time, I had to make a decision about Matt’s treatment and consider the possibility that Matt might not come back, even with surgery, and was that the life he would want. For the first time, I couldn’t ignore that quality of life was a factor in my decision or that choosing not to fight was the harder choice, but maybe not the wrong choice.

And then I spoke to the neurosurgeon, and afterward, I wrote in a text message to a friend: I’m a little cautiously optimistic right now.

Because the neurosurgeon, after reviewing Matt’s scans, had determined that he could take out a “good amount” of the tumor in the left parietal lobe with minimal risk. That sentence tipped the scales. Minimal risk and the possibility of high reward. Matt’s parents agreed, and we scheduled another brain surgery in the hope of getting Matt back. Maybe we’d get that chance to say all the things we hadn’t yet said.

That night, the neuro-oncologist spoke to me about the results of the spinal MRI. Oddly enough—or not that oddly, given I’ve admitted I was functioning on auto-pilot—I have no memory of this meeting and the moment she told me the MRI had revealed a drop of tumor at the very base of his spine. A drop, but it explained the bowel incidents and the pain in his legs. It explained so much.

I don’t quite remember the logic that followed. I know only that the hope the neurosurgeon had ignited couldn’t be extinguished. And that’s the truth about the hope infused into this story: one ember was enough to press back the darkness. One ember could write a whole new chapter.

January 16, 2018: The First Words I Wrote

The day before’s logic proved true. With Matt in the hospital, everything happened sooner. By the time I sent G and H off to school and arrived at Columbia on the morning of January 16, 2018, Matt was already hooked up to the EEG machine, which was supposed to reveal whether the incidents that had happened over the last week were caused by subclinical seizures. By the afternoon, the test revealed, and the doctors confirmed, there was no seizure activity.

By noon, the surgeon had been in to see Matt and determined that Matt was not a candidate for laser ablation—he had a cyst in the left parietal lobe tumor and it might not respond well to the heat from the laser. I don’t know if I was disappointed—from the beginning, it had seemed too good to be true. But, after a closer look at Matt’s chart, the surgeon determined that since the poliovirus procedure was not a surgery—only a biopsy—Matt was a candidate for a limited craniotomy (meaning a removal of some of the tumor). But there’d be serious risks. And there’d be no guarantees. The surgeon could perform the operation on Thursday, the 18th, but the decision whether to move forward was mine.

One I had to think about. I needed more information and more time before I made this decision for Matt. Time to think and breathe, to talk to Matt (as much as I could) and Matt’s parents, to find one more glimmer of hope in the darkness.

By nightfall, the spinal MRI still had not happened. Delays upon delays. I went home to put G and H to bed—I couldn’t be in two places at once and G and H needed their mother as much as Matt needed his wife. How to be in two places at once? How to be two people at once? A caregiver and a mother? These were questions I struggled with constantly during these last weeks.

At 8:12 p.m., I received my last text from Matt, Matt’s last text to anyone. He wrote “Hey” followed by a few messages I couldn’t quite make sense of. When I called him, rather than continue texting, he didn’t answer. Nevertheless, I was over the moon, so sure it was a sign of an upswing. Prior to this, Matt’s last text message to me had been his Chipotle order on December 18th.

One year ago today, in the very early hours of the morning, after a sleepless night, I started writing our story. The prequel to this blog. Not for G and H, not for myself. But for Matt. The very first words I wrote in this story were to Matt. I opened a new file, started with the words “Dear You” and ended with “Love, Me.” I wrote to him about our day and his latest admission to Columbia, wrote to tell him all the things I could not say to him. I wrote simply because I missed talking to him. I wrote because some part of me knew I was on auto-pilot and barely functioning enough to keep the details of the day straight.

I wasn’t going to re-read these letters. Ever. The plan had been to never look at those words I wrote to Matt. But a few nights ago, after apparently deciding that if I’m already in a grief pit, I may as well keep digging deeper and see if there’s a bottom, I re-read the letters.

The letters to Matt—there’s so much detail in those letters that I’d forgotten. Stories and moments and heartbreaks I didn’t share over text message with any friends and that I’d either blocked from my memory or failed to store as some self-protection mechanism; there’s that version of me in those letters that I was with Matt, that version that I know disappeared when he did; and there’s a stark honesty about the decisions we (I) faced and the truth we were living.

One year ago today, I started writing as a lifeline to cling to in order to keep myself from drowning, from losing myself entirely. One year later, I’m still writing, and despite the grief waves, I know I’m not drowning. So thank you to everyone reading along—even now, when the story is reaching the darkest days and the sharp edges cut through every attempt to dull them—for reminding me that I’m not alone and for giving me a reason to continue writing, to continue holding onto that lifeline to myself.

January 15, 2018: An Impossible Last

At about 5 p.m. on January 15, 2018, after just over one week of waiting, I got the call we’d been waiting for. A bed had become available in Columbia’s neurology ward. The woman who called me asked whether we still wanted the bed.

I had no contingency plans in place anymore. I’d been prepared to call the neuro-oncologist’s office when they opened the next day and schedule all of Matt’s tests as outpatient procedures. But, I couldn’t say no. The day before, Matt had fallen. The days before that, he’d needed help getting dressed and pouring cereal. We were plummeting too quickly and a hospital stay seemed like a way to change the speed of that plunge. The logic was this: if Matt took the bed at Columbia, he’d get the tests he needed sooner—the EEG and spinal MRI, he’d been seen by the surgeons sooner—they would stop into his room on morning rounds, he’d be safer.

Matt’s parents came to stay with the kids, and I drove Matt to Columbia. By 6:54 p.m., we were on the neurology floor and waiting for the nurse to complete the admission paperwork. Unlike every other admission, this time, Matt didn’t launch into a long-winded story about the weekend he was diagnosed. He didn’t mention the kilt or the beer-B-Q or the incontinence. By 7:23, Matt was settled in his room. At around 9 p.m., someone—a resident, maybe—from the neurology department arrived to test Matt’s cognition. They asked him where he was. He named the hospital in which he’d been diagnosed. They told him he was at Columbia. They asked him the same question a few minutes later. He said he was at the small, local hospital that sent him to Columbia in October. And my heart broke. Though, in retrospect, maybe I should have been prepared for those answers. I wasn’t. Somehow, I was always surprised and heartbroken when presented with evidence of how out of Matt had become. Because he was Matt and because he had that amazing brain, and because I kept expecting that upswing.

The neurology resident then asked Matt who the president was before Trump, and Matt—my husband who could rant about politics for hours, who could pull obscure sports facts and statistics out of his memory without missing a beat, who beat me at Jeopardy every week—said Conan. And I burst out laughing, which made Matt smile, at least.

Why the completely inappropriate burst of laughter? Maybe because I was stressed and exhausted, maybe because there’s only so much heartbreak one heart can take before becoming delirious, maybe because we’d ventured so far from the realm of possibility and I needed to do something besides cry. The resident looked at me and agreed that was a funny one he hadn’t heard before.

A few days ago, it occurred to me that though I am telling our story, I am officially only telling my side. The story of today illustrates why I can no longer give insight into Matt’s side of the story. Aside from the fact that I have no text messages or emails from him (to me or anyone else) because he’d stopped texting and emailing, I don’t know Matt’s side of the story; I don’t know what he understood of his story and what he could tell of his story. I can’t even begin to guess what and how he processed these January days.

I wrote in May that the problem with lasts is that they sneak up on you. It’s only in retrospect that you realize a last has passed, and then it’s too late to commit the details to heart. January 15, 2018 is a last that seems impossible. This last, the very nature of this last, should be crystal clear in my memory. It’s not. It’s a rushed, blurry moment on the way to another moment that is equally rushed and blurry.

The true story of January 15, 2018 is not the story of Matt’s final admission to Columbia. It’s the story of a last we didn’t see coming; the story of January 15, 2018 is the story of Matt’s last good-bye to G and H, his last time seeing them and speaking with them.

One year ago today, in an effort to slow down the speed of our plummet, Matt said a quick good-bye to G and H, walked out of our house, out of our forever home, for the last time. We (he and I) rushed out of the house convinced he’d be back in a few days, maybe a week. He wasn’t. We plummeted faster than anyone ever could have guessed.

We were so busy trying to slow down the pace of our plummet, we didn’t slow down the pace of this last we didn’t see coming. As a result, the details are hazy. So I’m left simply hoping. Hoping that G and H remember the feel of his arms hugging them close, the strength of his love, and the determination in his unsteady steps out the door in order to continue a battle against an invisible monster, all in the hopes of getting more time with them.

January 14, 2018: That Moment I Blinked

January 14, 2018 is the story of a last. As with all the lasts in this story, no part of me was prepared and no part of me could have guessed or suspected. There was no hint that January 14, 2018 would be Matt’s last night home and I didn’t pay enough attention to the details.

That morning, we had one last kid-free meal in the city. When we came home, Matt watched football with his dad while I took G and H to run around the mall. A friend texted me at 5:10 and asked how Matt was doing, and I texted: He’s not too bad, but to be honest he’s been on couch for hours kinda napping.

Exactly one hour later, at 6:10, I texted this: I lied. He just fell.

At some point, in the hour between text messages, Matt fell.

I remember the moment, that second that I blinked. I was making dinner while G and H were playing. Matt had been on the couch, where he’d been most of the afternoon, his three-pronged cane waiting beside him. I called in the family for dinner. G and H came to the table and sat. I looked into the living room and saw Matt stand, saw him start walking around the couch, and I blinked. And in that moment that I blinked, that split second, Matt fell. From standing to facedown, that fast. There’d been no time to catch him.

That feeling, like every nerve ending is sending lightning bolts through your veins, like fire and ice are vibrating in your bones. G and H stared wide-eyed as I raced across the living room, yelling out reassurances even as panic crashed through me. Matt was on the ground, but awake and terrified. No blood, no obvious injuries. I asked him if he was okay to sit up and he said he was. I helped him to sit, afraid to bring him to standing. We sat there, on the floor, leaning against the couch. I held his hand and told him to just breathe. I joked that he had terrible timing—we’d just spent 48 hours with his family, and he “chooses” to fall when our family of four is alone. Maybe Matt half smiled at that. We sat until Matt felt ready to stand. I remember my hands didn’t stop shaking for hours afterward.

We didn’t rush to a hospital—we were, after all, still waiting for a bed from Columbia. We didn’t call 9-1-1 or leave barely rational messages for every doctor—Columbia was closed for MLK Day on Monday. We didn’t do much but stand up and keep going. In retrospect, I can’t quite work through my logic. Maybe I wasn’t thinking clearly. Or maybe I already knew—because we’d raced to the doctor just a week earlier—that there was nothing they could do.

Unsurprisingly, the story of these days is jagged-edged and razor sharp. In the next three weeks, the story won’t get any softer. There will be moments of light, moments of love, but too many moments that are nothing but heartache, too many bleak moments that last for eternities and simply hurt. My heart broke a thousand times while living these days. And lately, my heart has been breaking while remembering these days, writing these days. The pain lately is as acute and sharp as it was those first days. Where it had become a dull, ever-present ache, it’s suddenly a knife point in my chest again.

Maybe that’s because that one year mark is quickly approaching. Maybe because that’s how grief works—there’s no rhyme or reason to the frequency or intensity of the waves. Or maybe because these past few weeks have brought new beginnings. In the last few weeks, I took a job as a proofreader—my first official step into the publishing world—and I started a Pilates teacher training program. The first two days of the program, I drove home in tears, barely able to catch my breath. Because I couldn’t call Matt and tell him about the great group of women I’d just spent the day with. Because these women would never know the version of me I was with Matt (and I liked that version of me). Because I’m moving forward after spending a year—296 posts and thousands upon thousands of words—living in the past, and moving forward without Matt is an entirely new form of heartbreak.

In the next few weeks, hope will flare—one more bright slash of light—and fade, and the question will become what remains after hope. The answer has frequently surprised me. Because while this is a tragic brain cancer story, it’s also a story of hope, how we constructed it, how we maintained it, and how we protected it when it all fall apart.

January 13, 2018: Paper Cuts

One year ago today, Matt, his sister, and I left G and H with my mom to spend the weekend in the city. Matt had started the increased dose of Dexamethasone—and, according to the text messages, that anger came back almost instantly.

No matter how much I stretch my memory, I cannot dredge up a single moment of Matt’s anger toward me on this day. I don’t remember what incited his anger, whether it was warranted or not. I’d like to say that the memory didn’t stick because I knew the anger wasn’t his, it was the tumor’s and it was the steroid’s, and so I simply shook off the harsh words. But, saying that would be saying an untruth. Because each angry word that wasn’t his left a paper-cut sized wound before I could shake it off. And eventually all those paper-cut sized wounds began to add up, and the wounds began to hurt. And there was no one to blame for the hurt, because it wasn’t Matt’s fault. Not even a little.

When we arrived in the city, Matt went to lunch with his cousin while I went to watch the Broadway play Dear Evan Hansen with Matt’s parents and sisters. Though Matt had gone to Hamilton weeks earlier (and loved it!), we were all fairly certain that Matt, even Matt before Glioblastoma, would have hated the play. Too much drama, not enough Lin-Manuel Miranda.

One song from the show stands out in my memory with a heartbreaking kind of precision. At one point, Evan Hansen’s mother sings about being a single mother. I couldn’t stop the tears. In the theater. In front of everyone. I cried because I was a child of a single mom and I saw her struggles reflected in that song; I cried because I’d felt like a single mom for so many of the last few months; and I cried because—though I was terrified to even allow the thought in—I realized that I might actually be a single mom at some point in the future, and (as the song suggested) there’d be moments I’d miss, moments I felt too small for the role I would have to fill. I cried because I hadn’t slept more than a few hours in a row in weeks, because I didn’t know what tomorrow would look like, and because holding it together was beginning to tear me apart.

I remember returning to the hotel and finding Matt with his cousin. I remember dinner and a handful of awkward moments. I remember going to bed, worrying whether Matt would be okay overnight in an unfamiliar place, whether the bathroom floor was too slippery, whether there was some safety protocol I hadn’t thought to put in place.

January 13, 2018 was a last. A last non-medical trip into Manhattan, the city in which our relationship had blossomed and grown; a last dinner out, even if it was hard; a last chance to feel a little normal.

That night, as we went to bed, I asked Matt what he thought of the day. I don’t remember exactly what he said, but I remember falling asleep grateful in the knowledge that Matt was happy. Happy he’d celebrated his mom’s birthday, happy to have an incredible view of the city, happy, maybe, thanks to the lingering glow of a loving family. It had been a tough day, but Matt was happy and all the rest became static, at least for a few hours.

January 12, 2018: A Step Backward

Instead of writing fiction in the early hours of the morning, I Googled. I typed the words “laser ablation GBM” into Google and tried to make sense of the articles that appeared. Before the sun rose, I read everything I could find. And after reading a few of the results, I was cautiously optimistic. Laser ablation sounded like a great option and I couldn’t believe we hadn’t been offered it before. The quick summary I found led me to believe that laser ablation surgery, a procedure that used heat to destroy tumors, was precise, noninvasive (I think?), and produced fewer side effects.

Maybe I was jaded, maybe I was worn down by the medical system and losing faith in treatments that sounded too good to be true, because I knew there had to be a catch. At 5:59 a.m., I turned to a familiar forum for help. I wrote: Does anyone have experience with laser ablation for GBM? Short term and long term side effects? My husband has GBM and leptomeningeal spread. He underwent whole brain radiation and the leptomeningeal stuff is stable but the one primary tumor continues to grow and is causing a lot of symptoms. He is not a candidate for surgery, but the NO (neuro-oncologist) suggested this procedure. I’m so hopeful that this may bring him back a little.

That was the goal, the hope. To bring him back a little. Because once he was back a little, we could figure out the rest. We could, together, reach for the miracle again.

My desperate question received only one response, and the answer was the smack of reality I’d needed.

The morning had been difficult. Matt’s balance had further deteriorated; he was tipping into walls and refusing help of any kind. He despised the three-pronged cane from the medical company, and when he did remember to carry it, he couldn’t use it correctly. He often held it in his hand, letting it hover in the air rather than using it to steady his balance. After he’d needed help getting dressed that morning, everything from T-shirt to socks, I called the nurse. A bed hadn’t become available, and we (the doctor, Matt’s parents, and I) had decided we’d delay the admission if it did, but something had to be done.

Again, for what felt like the millionth time, we weighed the pros and cons of increasing Matt’s dexamethasone. The cons were many: that anger would return, the pain in his joints could return, his appetite would increase. The pros—there was only one: he might (might!) gain some stability back, which might (might!) decrease the possibility of a disastrous fall.We chose to increase the dex, which felt like a step backward, but Matt’s safety mattered more than all the rest. That afternoon, I texted a friend and said after the weekend, I’d need to look into nursing help. I’d been leaving him on his own for an hour each day while he napped—using the time to either pop into a grocery store or sneak in a run or race the kids to an activity—but suddenly even sixty minutes felt perilously dangerous.

That afternoon, H had a playdate over, a little boy whose family had just moved to town. He’d been begging for the playdate, and, like with G’s sleepover, I couldn’t say “no” anymore. He deserved normal, he shouldn’t have to stop being a kid. I didn’t know what his mother knew about Matt and I didn’t know how much I should share. (Ultimately, my worrying was for nothing—Matt slept upstairs through the entire playdate.)

I struggled with what to tell her, not because Matt’s condition was a secret (in a small town, some news travels fast), and not because it felt like a betrayal (though, it always did), but because I’d never said the words aloud, not without following them with the assurance that he’d be fine—all the doctors said so—and we had every reason to be hopeful. But I couldn’t say that, because it wasn’t true, anymore. And I didn’t know how to tell a harsh truth without trying to soften the blow. I didn’t want to put into words that our hope had shrunk to a single ember, because all that mattered was that hope was there, that the ember hadn’t stopped burning.