August 31, 2017: Day 2 of Gamma Knife

Matt finished with day two of Gamma Knife by eight in the morning. We had the entire rest of the day to ourselves. Twelve hours, at least. The story of August 31, 2017 is long and scattered and to be honest, slightly tragic. August 31, 2017 is not only a day with a heartbreaking last, but also a day that I can’t help but look back on and ask “what if.” Despite my best intentions to avoid the question, I can’t help but ask “what if” and single out a villain.

After Matt finished day two—again with no immediately apparent side effects—we rode the elevator upstairs to the neuro-oncologist’s office. The Dex the doctor had prescribed helped somewhat with Matt’s neck and back pain, but the double vision was only getting worse. Matt struggled to read and watch television. In our email correspondence, the nurse had never specifically addressed Matt’s worsening double vision so we decided to skip email and phones and ask our question in person. (Pounding on that door for attention.)

We weren’t granted access to the doctor. She was off-site and every other doctor was busy with back-to-back-to-back patients. Instead, a nurse (one who was filling in for our usual nurse) came out to speak with us. The nurse sat us down in a corner of a waiting room and listened as I explained the pain and Matt’s worsening double vision. The nurse told us to see an ophthalmologist for glasses.

Matt and I thanked the nurse for his time and agreed that a visit to an ophthalmologist made sense. We tried to sightsee downtown Durham, but Matt’s headache returned with a vengeance. We went back to the hotel for Matt to rest—close the curtains, shut out daylight, and sleep. As I had the day before, I made my way down to the courtyard to write. This time, I wasn’t alone outside.

Despite all the empty tables in the courtyard, a man with a cane sat at the table nearest to mine. I recognized him—Matt and I had seen him sitting at the bar the day before and chatting with the concierge that morning. He smoked cigarette after cigarette while I stared blankly at a screen waiting for words that didn’t come. After a while, he struck up a conversation with me. I learned that he was a patient of Duke’s as well, and living in the hotel for the next six weeks while undergoing a first round of radiation for a brain stem tumor. He told me the tumor was inoperable, that he’d lost feeling in one entire side of his body—hence the cane—and that he was staying at the hotel alone, though his ex-wife was coming to visit that afternoon.

I gave him a rough sketch of Matt’s story and told him we were in the poliovirus trial. He said he’d been ineligible. In that moment, I couldn’t help but feel grateful, again, that Matt had made it into the poliovirus trial, that we had this true glimmer of hope in our lives.

The conversation ended when Matt called to tell me he was awake and the man’s ex-wife was due to arrive. The man wished Matt good luck and I wished him the same.

Matt was feeling better and we decided to see a movie and go out for dinner. We watched Lucky Logan, a movie I’d never heard of until that day. Afterward, we went out for dinner to a place called M Sushi. We sat at the sushi bar and ordered plate after plate. Matt was as himself—sarcasm, humor, sharpness—as he’d been in days.

August 31, 2017 stands out in my mind—without the help of text messages and emails and photos—for three reasons.

One, I remember how bleak the man sounded when he spoke about his diagnosis, how my heart ached for the lonely man undergoing treatment day after day without a single loved one around. I remember thinking there is no one who is fighting this brutal disease who doesn’t want only to be seen and heard and treated as more than a number in a clinical trial by someone.

Two, the moment Duke told Matt to get glasses for the double vision and dismissed us from the waiting room remains stuck in my mind. I cannot think of that moment without my stomach knotting up. I cannot help but think “what if?” I have to use all the strength left in my body to keep from screaming, from pointing my finger at those minutes in the waiting room and believing that I’ve found the moment Duke truly failed us. They should have asked more questions. They should have paid more attention. They should have seen what Columbia saw all those weeks later.

Their failure, their epic dismissal and failure to pay attention to what Matt and I were saying, won’t be discovered until early October while Matt battled for his life at Columbia. Their failure, their epic dismissal and failure to pay attention to what Matt and I were saying, is something that I don’t know I’ll ever be able to forgive.

I’ve said before that my goal is not to tell the story to make anyone look like the villain and that remains true. The truth is that Duke may have made a mistake and it may have impacted the end of our story, or it may have done nothing but shift the lines of our hope. The truth is that I may have made a mistake by failing to keep Columbia in the loop. (That moment I’d lost faith in them becomes crucial.) The truth is that even identifying the moment the story could have gone into a different direction doesn’t change the direction in which the story went.

And yet, that “what if” and that outrage lingers on the periphery.

The final reason August 31, 2017 sticks out in my mind is this. Matt and I hadn’t been ourselves in weeks for the dozen or so reasons I’ve already given. I’d warned at the beginning of this month that, by the end, our lives would be turned upside down and nearly unrecognizable. But on August 31, 2017, sitting at the bar of M Sushi, ordering plate after plate of (delicious) food, we weren’t patient and caregiver or ailing husband and worried wife. We were simply Matt and Elaine. August 31, 2017 is a last—our last truly fun date night, the last time I remember being us.

That sounds sad and it is—five months remain in this story and in those five months, the memories in which I can say we were simply Matt and Elaine become nearly impossible to detect—but I find myself comforted by the memory of August 31, 2017. So many lasts, including the last “I love you,” are lost to the tapestry of memory, but not this one.

August 31, 2017 could be a day defined by anger or regret or heartache. But it’s not. Because when I think of August 31, 2017, I think first of that fun dinner, and find myself grateful to have the memory of laughter and love burning brighter than all the rest.

August 30, 2017: Day 1 of Gamma Knife

Our flight to North Carolina took off at 8:45 a.m. on Wednesday, August 30th, 2017. We took a taxi straight from the airport to the Duke medical center, and by 1 p.m., Matt was done with the first of his three day Gamma Knife treatment (technically, his procedure was called Stereotactic Radiosurgery, or SRS).

Matt experienced no immediately apparent side effects from the Gamma Knife radiation. He walked into the procedure the same way he walked out. And because Gamma Knife was an out patient procedure, we were—in theory—free to do as we wished the rest of the day.

But August 30th is not the story of an easy day. If this was fiction, and I was writing a novel, I might call August 30th my second plot point, the beginning of the third and final act of the story. In the second plot point, the stakes are raised, all the new information has been introduced, or at least hinted at, and the protagonist is on an inevitable path to meet the antagonist head on.

Earlier in the week, I’d asked Matt whether Duke had confirmed a time with him for his spinal MRI. He’d told me yes. I didn’t question the truth of this statement. Why would I? Matt had scheduled all his own appointments since the moment we learned of his diagnosis. But after the Gamma Knife radiation, when I checked the schedule of our appointments on our medical itinerary, I didn’t see a time or date for the spinal MRI. Matt couldn’t remember when the MRI was to take place, or who had called to confirm, or when the call to confirm had occurred. His explanation was simply: I don’t know.

We headed upstairs to the neuro-oncologist’s office to attempt to figure out why the appointment had been left off the schedule. The receptionist told us no appointment had been scheduled.

I realized that Matt had never received a confirmation call for the spinal MRI. He’d likely confused another conversation.

The receptionist told us that the MRI machine was booked solid for the next few days because of the holiday weekend. I told her we were desperate, we would take anything. She paused for a moment, searching our faces. I think she saw the fear and weariness and general despair in our expressions. She called a friend of hers at another facility and squeezed us into the last MRI slot of the week. A kindness I can never repay, one I can only hope to pay forward.

Afterward, we walked to get lunch at a place halfway between the hotel and Duke’s campus. This was often our routine, a way to stretch our legs, after a day of sitting around waiting for doctors. But the half-mile walk was hard for Matt with his carry on bag and we decided to call the hotel shuttle to drive us the other half-mile to the hotel. I called the hotel and they told us they would not come to pick us up because we had no reservation under either of our names.

Since the moment Matt and I started dating, he had been in charge of all of our reservations. I once tried to take the responsibility from him. I made a reservation at a resort that many of our friends had visited before. But somehow, (despite all the advice and reviews) I’d reserved a room on the wrong side of the resort, next to the theater which performed well past midnight, in a room too small for our family of four. Matt never let me live down the mistake—and immediately took over reservation responsibilities again. (I was only too happy to give up this responsibility.)

On August 22, I wrote that the devil was in the details. One year ago today, it didn’t occur to me to double check whether Matt had made his spinal MRI appointment. Just the week before, he’d made all his own appointments. One year ago today, it didn’t occur to me that Matt wouldn’t be in charge of our hotel reservation. Just the week before, he’d made a reservation at the same hotel for his overnight. When I asked him whether he thought he’d made the reservation or whether he’d simply forgotten, he responded the same way he’d responded to my questions about the spinal MRI: “I don’t know.”

“I don’t know” became an answer I heard too often as Matt’s ability to process information and answer questions grew more compromised.

We walked the half mile. I carried both of our bags and we made slow progress to the hotel that I could only hope would have room for us when we arrived. They did. And the receptionist’s kindness in the face of our fear and weariness and general despair is something I won’t soon forget.

When we were settled in a room, I went down to the courtyard to write while Matt rested upstairs. I texted a friend and wrote: I didn’t actually realize things were like this.

What I meant was that I didn’t realize Matt’s independence had been impacted. Despite the symptoms I noticed, despite the fears and concerns that had been making sleep impossible over the last week, I’d somehow failed to realize how much Matt had declined. How much help he needed to do things he’d always done.

That slow decline. The brutality of brain cancer. I hadn’t for a moment taken my eyes off of Matt and I’d still missed the moment his decline had taken a steep dive.

The day ended when Matt finished with his spinal MRI at about 9 p.m. We fell into bed, exhausted from the day, hopeful that with Gamma Knife, we were one day closer to the next upswing. Or, better yet, one day closer to a cure.

That night, for the first time in weeks, I slept.

August 29, 2017: Last Beach Day

August 29th, 2017 was the last day Matt and I had left at the beach to make the most of our vacation with the kids. We had less than twenty-four hours to make lasting memories. And less than ideal weather for the beach.

The cloudy skies and cool temperatures from the day before devolved into soaking downpours and miserable moods. We struggled to find something to do and finally decided on the arcade. Along with most of the other families staying in the beach town.

The arcade was crowded and loud. Bright lights blinked on and off, kids screamed, games blared and boomed and buzzed. And at the end, the line to claim a prize circled the entire arcade. It was too much for Matt. He was frustrated—I blamed the Dex—and left to wait for us in the car. (Though to be fair, every parent there would have preferred to wait in the car.)

That night, we (Matt and I) said good night to G and H and made the lonely trip back home. (Our flight to North Carolina was early the next morning.) I texted a friend to tell her that I was struggling leaving the kids. I knew they’d be fine with Matt’s family,—more than fine— and we’d left them in order to travel to Duke for treatments before, but leaving them this time tore me apart. Even a year ago, I understood why leaving G and H was more difficult than it had ever been.

I wanted to be the fun parents at the beach. I wanted to go to the arcade and look for seashells by the shore. I wanted to go out for ice cream and point out the colors in a sunset. I wanted to be who we once were, who we simply couldn’t be anymore. Too much of our mental energy was spent on brain cancer. Conversations and thoughts revolved around medications and appointments. Matt wasn’t himself—often withdrawn, plagued by double vision and pain, afflicted with bouts of confusion—and I was lost in my own worry and anguish and anxiety.

I remember the moment we (Matt and I) closed the door to the beach house where G and H would finish out the rest of their summer without us. it I’m not sure how to describe that feeling. I don’t know if there is a way to describe the feeling of a heart ripping into two equally distraught halves.

The single idea that made it possible to pull that door closed was this: G and H would still make happy memories. They’d have each other and grandparents, aunts, an uncle, and cousins.

I fought back tears for most of the drive home. I hated for Matt to see, but I couldn’t help the ache in my chest, the worry that I was failing G and H on some fundamental level. I texted a friend—for comfort and distraction. She offered up a funny (cringeworthy?) story from her own day. It worked wonders. I found myself laughing at the text, sharing the most unbelievable parts of the story with Matt, and finding some common ground with him on a night when he was particularly symptomatic and I was particularly emotional.

On a night fueled with anxiety and heartache, a night when I was missing G and H, missing the Matt I married, and missing our old life, I turned to a friend who offered an ear and a distraction.

That night, Matt and I went to bed, anxious about the early morning flight and the procedure to come, but grateful for the family we knew would step in to make those fun memories with G and H, and the friends who were always willing to listen and serve up a funny story.

A little light and a little love in a story gaining speed as it presses deeper into the darkness.

August 28, 2017: A Season Finale

A handful of memories race through my mind when I think of August 28, 2017. I remember going out for a run in the morning and failing to bring any cash with me to buy Matt a blueberry muffin. I remember cloudy skies and cool temperatures kept us from sitting on the beach. I remember climbing a few hundred steps to the top of a lighthouse with G and H, looking over the side to try and spot Matt waiting on the ground below.

I remember watching the finale of Game of Thrones on Matt’s iPad after G and H had gone to bed. I remember how the WiFi kept cutting out and Matt kept accidentally restarting the episode. I remember drinking wine and laughing with him every time he pressed the wrong button. I remember the swirl of emotions as I watched Matt find a way to laugh about his brain’s brutal betrayal.

Game of Thrones ended and Matt and I sat in silence, stunned by the season ending of the show we’d been watching since season one, episode one. I looked up the next season start date—February 2019, almost a year and a half to wait for the finale season of Game of Thrones.

When I had the idea for this blog, I bought a yearly planner and wrote down a few key dates with the intention of filling in the other dates. An outline, of sorts. As of today, most of the dates in that planner remain blank—most mornings, I don’t know the story until I sit to write it. Of the 365 days in that planner, a dozen—maybe two dozen, if I’m being generous—are not blank. August 28th is not blank.

One year ago today, in between sips of wine and fits of laughter, in between wondering whether Matt’s withdrawal was due to tumor or heartache, I accidentally allowed a thought to slip into my mind. I looked at the date Game of Thrones was scheduled to air, looked at Matt, and was submerged in the heaviness that accompanies what if. I thought: What if Matt’s not here to watch with me in 2019? What if he doesn’t defy the odds?

The moment the thought entered my mind, I banished it. That kind of thinking was overdramatic at best, and capable of inviting in bad energy, at worst. I hated that I had the thought and I blamed the wine and the emotional Game of Thrones ending (which, oddly enough, I don’t even remember now). I despised that the thought had crossed my mind and I never told a soul.

But the day I started writing this blog, I knew I’d have to write about that traitorous thought. Because this story deserves honesty. Always. Because after I write about a day, it replays less often in my mind. A kindness to my often scattered widow brain. And because, simply, it’s a crucial moment in the story. That first traitorous what if.

I’ve fixated on this moment often in the last twelve months, both during our year of hope and in these Post Hope days. I’ve wondered what brought on that thought, how it could have slipped past the defenses I’d put up to bar any negativity. Once again, how and why.

The answer I’ve come up with is this: Hope doesn’t mean the absence of despair. I think hope is actually a choice informed by despair, the way light is informed by darkness. I had to acknowledge reality, the terrifying odds and statistics and heartbreaking stories, to have hope. To truly choose hope, not hide behind denial or delusion, I needed to understand the depths of despair.

One year ago today, for a moment, I acknowledged the worst, but went to bed believing the very best. With the highest hopes.

August 27, 2017: Early Mornings

Sunday, August 27, 2017 marked our first full day at the beach. The timestamp on the picture of Matt smiling at his niece reveals that we were all up before 8 a.m. (What’s a vacation with kids?) The text messages reveal that Matt wasn’t himself—his humor and ability to engage had vanished, maybe not completely, but enough to be noticeable—, and that more and more often—too often—I spotted Matt sitting with his left eye closed.

The text messages also remind me that H asked Matt why he was closing his eye. Matt explained to H that he was having trouble seeing, but that we were going to his doctors in a few days and maybe they could help.

I’d told G and H that Matt and I would have to leave the beach early to go to Matt’s doctors. I’d explained that they’d stay with their grandparents, aunts, uncle, and cousins. I’d explained, but apparently not well. G and H hadn’t realized that we would be gone for longer than an overnight. They were upset when they understood that they’d be finishing the annual family trip to the shore without us.

G and H recovered quickly when reminded of all the fun they’d have, even without us. But it broke my heart for those few moments to see how brain cancer—a term they still didn’t know—had impacted them. We (Matt and I) wanted nothing more than to protect them from heartache, from a truth that was growing too impossible to hide.

We didn’t realize it then, but we were fighting two battles simultaneously…maybe, losing two battles simultaneously. The battle against an aggressive tumor. And the battle for G’s and H’s untarnished childhood.

At about 7:52 p.m. I texted a friend and wrote: Somewhat tough days here for Matt. It’s very obvious how out of it he is though. Super sad.

And yet, the photo I took at 7:48 a.m., of Matt and his niece, tells a completely different story. In that photo, Matt looks happy and present and wholly himself in a way that doesn’t harmonize with the text message I sent just twelve hours later. My mind instantly jumps to a few possible explanations. Maybe I was overreacting—always a very real possibility. Maybe Matt’s mornings were easier than his evenings—this was true and a fact Matt was aware of. But maybe, no explanation is needed. Maybe Matt was himself in one moment and not himself in another. Maybe the space and time between that photo and my text message is Matt fighting the disease, doing his best to be himself when the tumor kept trying to take him.

One year ago today, I couldn’t tell whether Matt’s quiet, almost withdrawn, state was due to sadness about his health, anxiety about the upcoming treatment, my overactive imagination, or whether he was disappearing to the tumor. Whenever I asked him, he confirmed that he wasn’t sad. Upset about leaving the kids, annoyed that he needed more treatments and the poliovirus wasn’t the easy cure we’d hoped it would be, but too positive to be depressed. Always positive. Always confident he would get better.

And because of the foundation of that dynamic that existed between us—the one where I trusted Matt more than I trusted myself—if Matt was confident he’d get better, I was, too. We just had to make it through this rough patch. And we could do that. We were doing it, one moment, one breath, one early morning smile at a time.

August 26, 2017: A Little Light. A Little Love.

August 26, 2017 adds another last to the story. One year ago today, we (Matt, G, H, and I) packed the car and drove down to the Jersey shore for our annual vacation with Matt’s family.

I don’t remember much of the morning. The text messages reveal that we got a late start. I wanted to get in a workout, we needed to pick up Matt’s Dex prescription, and Matt’s back was bothering him, which meant he couldn’t help packing the car. The pictures reveal that we arrived at the shore and went down to the beach. But the morning is a blank in my memory. I don’t remember loading the car, whether Matt needed help packing, or how much traffic we sat in on the Garden State Parkway (apparently a lot).

What I do remember is every pre-GBM road trip Matt and I took together. Memories I can summon without even needing to close my eyes fill that blank space. I can picture him at the steering wheel, sunglasses on, driving just a little too fast on the highway. We had some of our best debates while on the road, driving somewhere, anywhere. Political, social, economic. I never failed to be amazed by the depths of Matt’s knowledge. I never failed to hope he couldn’t tell that I couldn’t keep up with him.

Later that afternoon, I texted a friend and told her that Matt’s symptoms seemed unchanged, but that he was having a good start to beach time. We sat by the ocean in the late afternoon, he enjoyed family time and the break from the relentlessness of our real life. A little light. A little love. We put our feet in the water and watched the waves rolling toward us crash against the shore.

I’m struggling to find the words to finish the story of today in a way I haven’t struggled in quite a while. There are a dozen reasons for the struggle. Solo parenting two kids with no school or camp as a distraction is lonely and exhausting—mentally, physically, and emotionally. We’re approaching Matt’s birthday and what Matt and I called “present season”—something I’ll explain when it officially arrives. The story is heading into unforgiving days and the lasts will begin to compound. And McCain.

Today, I am heartbroken for his wife and his kids and the brain tumor community as a whole—I had hoped he might be the one to find a cure.

I didn’t know him (obviously). Despite a (not so exhaustive) Google search, I don’t know how his tumor manifested physically or mentally. I don’t know the treatments he underwent or how he walked the thin line separating hope from despair.

But I do know what those first bleak hours of Post-Hope feel like. I know that taking that first breath after he takes his last feels like a betrayal. I know that the darkness that closes in when hope officially extinguishes makes it easy to forget that light ever existed at all.

I know that it’s okay to burrow deeper into the darkness, let the waves knock you down and hold you in their current for a while. But it’s also okay to hope for a light, to reach for a glimmer of joy when it appears, to recognize that sometimes hope can exist, even in a post-hope year.

I know only that I don’t know much. I’m making it up as I go along and hoping I’m getting it right once in a while.

So I’ll end with this: soon, G, H, and I will stand on the beach—without Matt—and it’ll hurt. We will put our feet in the water and watch the waves crash against the shore. We will undoubtedly be pulled into that darkness while the incontestable truth of his absence roars around us. But I don’t have to hope we’ll find our way out. I know we will. There’s too much light and love left in Post-Hope to be lost in the darkness for too long.

August 25, 2017: A Photo and a Fear

August 25, 2017 was Matt’s last day of work before we headed to the shore for a family vacation and then to Duke for another round of treatment. The plan we came up with gave us four days of normalcy at the beach with G, H, and the rest of the family before we had to return to the world of brain cancer.

One year ago today, I waited for the nurse at Duke to call me back. I’d sent an email with a rundown of Matt’s symptoms the night before and left a voicemail in the morning. I could see that the email had been read, so I hoped her silence meant she was consulting with the doctor, getting a plan together for Matt.

At 1:58 p.m. I texted Matt to ask how he was feeling. He responded with this: Same story. Good in spurts. I recoup fast but the double vision sucks for a while. Then gets better. But definitely on and off all day (and last few days). He followed up that text with a picture of himself with one eye closed.

I’ve said that so many days are a blur in my memory. I’ve said that our lives began to spin out of control, one episode on the heels of the next and I barely managed to process one new development before we were hit with another.

But I remember the moment I received that photo of Matt. I remember the physical reaction I had to seeing him with one eye closed. The way my stomach dropped. The way an anxious current started in my heart and shot through to my fingers, which shook as I responded, my stress and fear manifesting in less than a compassionate response. I texted: Way to fuel my anxiety. I hope that’s on purpose.

I owe this story honesty. And honestly, sometimes I was too afraid to be compassionate. And for reasons I can’t pin down, that picture scared me more than it probably should have.

Matt told me he couldn’t text without closing one eye to see but I began to worry that he also was having trouble controlling the muscle in that eye, that the eye was closing without Matt realizing it.

I picked Matt up from work and we went out to dinner with G and H. I remember the moment the Duke nurse returned our call. I remember glancing at Matt, knowing he’d think I was overreacting, as I told the nurse about the double vision, headaches, and neck pain. I told her that Matt might disagree, but that it all seemed worse to me. She said the doctor had decided to put Matt back on Dex in an effort to hopefully relieve some of the symptoms. She said he should continue taking nothing more than an Extra Strength Tylenol for the pain. And she referred Matt for a full spinal MRI during the few days we’d been at Duke for the Gamma Knife radiation.

I was relieved when she suggested the spinal MRI, though it meant a long and uncomfortable test for Matt. The unspoken fear that Matt’s intense neck/back pain was caused by the tumor traveling into his spine had taken root in my mind. I’d been losing sleep for days worrying, staring at Matt’s neck and posture, telling myself that I’d simply read too many random studies and I’d implanted too many worst case scenarios into my head. I’d spent endless hours reminding myself that GBM does not leave the brain, except in the rarest of cases, and Matt was not that rare case. Of course not.

He was. And somehow we didn’t know until January, weeks before the last ember of hope extinguished.

And the questions I’m left with are how–how did it escape notice for so long–and why–why did Matt’s tumor run rampant in the unbelievable way that it did.

I don’t know whether this story will provide those answers.

What I do know is that what happened to Matt is rare. I searched the dregs of the Internet and found almost nothing comparable. I’ve almost convinced myself that the way his tumor mutated and ravaged his body and mind is a nightmare unlike any the doctors had witnessed before. (Always overdramatic, even in Post Hope.)

What I do know is that his story needs to be told, not because it may help someone at this point—because I truly hope no one can relate to the story about to unfold—but because any fight that is fought with the strength, courage, and heart with which Matt fought deserves to be told and shared.

August 24, 2017: Same Team

As it turns out, I couldn’t simply go along with my day on August 24, 2017 without hearing about that latest MRI, even knowing that likely nothing had changed.

I spoke to the radiation oncologist who confirmed that there’d been no significant growth in either tumor. She mentioned that even a millimeter of growth could cause a change in symptoms, and likely that was the cause of the double vision. She urged me to call Matt’s neuro-oncologist at Duke and confirm with her what to do next, if anything.

Around 9:45 a.m., I texted Matt the highlights of that conversation. An hour later, I hadn’t heard back and texted him again to make sure he was fine with me nudging his doctors on this issue. He responded with this: I got a brain tumor floating around. We are going to duke in like 5 days. Just took Avastin yesterday. In a week we will be there [back at Duke]. I’m 100% fine today. For all I know I might be able to drive now just playing it safe. I’m not seeing double when I look or talk to someone. Let the medicine work. But I don’t want to ever tell you not to do something so if you would feel better emailing or calling them, then go for it.

In our pre-hope life, Matt would have added the words “same team”—his way of reminding me that we may disagree about the means, but our end goals were always the same.

In looking back, there’s no question that we should have been calling the nurse and the doctors. Calling, emailing, pounding on doors for their attention. But in the moment, the decision was more nuanced. The MRI hadn’t changed in a week, but Matt had. The doctors had just seen him, but they’d let him fly home, told him to enjoy his few days of vacation and come back in a week.  If I called and emailed and shouted about Matt’s symptoms too loudly, I was breaking from Matt’s view that everything was under control—and I couldn’t do that. Matt knew best, didn’t he? He was the lead in his story; I was the supportive sidekick. Also, if I shouted too loudly—if I was the one voice shouting when all the voices who knew better seemed so rational and calm—I’d risk looking like the hysterical wife and would lose credibility when it mattered. Like the boy who cried wolf. And yet—

I did call and email the nurse, but stopped short of pounding on the door for attention. (That’s next week.) And I did so exactly for the reason Matt suggested—to make myself feel better. It made me feel less alone to imagine the nurses and doctors reviewing Matt’s symptoms, spotting details I’d missed, ignoring details I’d blown out of proportion. It made me feel better to think they were on my team, to believe they were as anxious about every new change as I was, and to know they were there as a second line of defense if I wasn’t quick enough to spot the symptom that would change the shape of our fight again.

The nurse called me back at the end of the day. I was busy with G and H and missed the call. (Obviously I was supremely angry with myself for missing that call.) When I called back, she’d already left the office for the evening. I emailed her letting her know I’d call in the morning, and typed out what I wanted to discuss. I wanted it in writing so that I didn’t miss anything on the phone.

By evening, Matt’s back and neck pain had become so severe he could barely move his neck from side to side.

One year ago, Matt and I disagreed on whether to call the nurse, and I didn’t take his lead as I had so many times in the past. That renegotiating relationships I introduced to the story begins taking root and sending spiderweb thin cracks through the solid foundation of our marriage.

The story of today is not to pat myself on the back—the emails and phone calls over the next few days did nothing to impact the days and weeks ahead. The heart of today’s post is the realization that the story is going to start to split. Up until now, most of the time, the story has been ours, mine and Matt’s. After today (more or less), the story I can tell is mostly only mine. The things Matt and I left unsaid, the cruelty of brain cancer, all of it came together to try and divide us.

The story of today sounds suspiciously like heartbreak, but the story of today isn’t heartbreak. Our story split, but that didn’t mean we were divided. How could we be divided when our hope was unbreakable, when we remained, simply, on the same team fighting for the same thing?

And that same thing–nothing less than a cure.

One year ago today, despite it all, our eyes were still locked on that very, very highest star in that interminable darkness.

August 23, 2017: The Checklist

One year ago today, Matt met with the Gamma Knife radiation team at Duke, while I listened in on speaker phone. After the call I texted a friend and said I was impressed with the radiation oncologist we’d met. She was compassionate and knowledgeable and patient with Matt as he repeated his entire medical history to her, not failing to include all the details— that kilt. Afterward, Matt went to another MRI and then a simulation to determine the best placement of his body for the radiation beams.

Around noon, Matt left Duke. I asked if he’d gotten the results of the MRI and he said no. He didn’t expect them to even call with the results because he’d just had a MRI the week before. What could have changed in a week? I hoped the answer was nothing, but this tumor had snuck up on us too many times already. I told Matt that I’d like a live stream of exactly what was happening in his head at all times, if that was an option. He laughed and told me his flight was delayed due to bad weather.

When Matt finally landed, he fought through rush hour traffic to get home. I have a vague memory of Matt arriving home. His double vision had returned during the drive home. His headache returned. The pain in his neck and back had returned, grown even more severe.

The story of today is another last. That somewhat perilous drive home from the airport was the last time Matt drove a car. He stopped driving out of an abundance of caution. The double vision wasn’t constant yet, but we agreed driving with the risk of double vision returning at any moment was too dangerous.

The story of today is another first. The beginning of what Matt—affectionately and irritatedly—dubbed the Checklist. The beginning of the days when I’d ask Matt about each of his symptoms—headache, neck, back, vision—and assess whether any particular symptom seemed worse or better that day. The beginning of the days when I stopped hiding my concern from Matt. And also from G and H. They frequently began to chime in, asking me whether I’d done the Checklist yet, asking Matt whether he’d answered the questions on the Checklist. In the early days of the Checklist, before Dex made a comeback in our lives, he was a good sport about the Checklist and indulged his anxious wife.

Looking back on the first day of the Checklist, on Matt’s last day of driving, I cannot wrap my head around the idea that this was all only a year ago. Or that on this day one year ago, we had exactly five months left until January 23rd, the day the sky caught fire and my world came crashing down. Or that yesterday at 9:37 p.m., two hundred days had passed in Post-Hope. I spent the entire day trying to decide if it all still felt like a nightmare, whether I was still half in denial that all of it actually happened or whether reality had sunk in. At the end of a long day of allergists and dentists and dripping ice cream cones, I didn’t have an answer.

So, I did what Matt and I always did at the end of a long day. I read two books to G and H at bedtime, went through the good night rituals, and found a reason to hope.

August 22, 2017: Double Vision

August 22, 2017 is the first time the text messages reveal a symptom that becomes crucial to the story. It appears in the story as a single question that I texted Matt at 10:07 a.m. You can drive right? No double vision for driving. He responded: I will see how I feel in 30-45 minutes but right now I’m okay.

In 30-45 minutes, Matt’s vision was still fine and he decided he could drive himself to the airport for his overnight at Duke. He missed the exit on the way to the airport. He nearly missed his flight because he didn’t hear the announcement that his plane was boarding. He’d forgotten to pack a couple of things that the pre-brain cancer Matt wouldn’t have forgotten.

Matt had traveled alone to Duke for overnight visits and same day in-and-out visits half a dozen times, and when we’d made the decision—just days prior—that he would travel solo for this trip, we were thinking of all those previous trips. We weren’t thinking of how much Matt’s physical and mental health could decline in just a few days. Despite all we’d been through, we were still unprepared for the swiftness and unpredictability of brain cancer.

When Matt landed and arrived at Duke, I remember breathing a sigh of relief. He was spending the day and the night and the next day in the hands of the very best brain cancer people in the world. They would see what I saw through expert eyes. Their level of worry after seeing what I’d been seeing at home would inform my level of worry. The rationale: if they weren’t worried after observing and listening and examining Matt, then I shouldn’t be worried.

That night, Matt completed blood work at Duke and received another dose of Avastin. Afterward, he emailed the doctor at Columbia.

Matt wrote: I decided to go back with Duke. They made a compelling case about why we can’t remove the tumor. I am going to get Avastin today at Duke and continue treatments tomorrow and then late next week. I will certainly keep you updated and look forward to seeing you soon. Thank you for your support and guidance.

The doctor responded with this: I understand completely. Yours is a complex case with no clear right or wrong. Please keep me posted.

I don’t know exactly when Matt’s double vision started, but after today “double vision” appears in the text messages Matt and I exchanged and in the emails we sent to Duke. Where it does not appear is in the correspondence with Columbia. Whether by oversight or because we believed Columbia wasn’t invested in Matt’s case (a wrong assumption) or because we’d told Duke and that was enough, we didn’t mention this new symptom to Columbia one year ago today.

The story of today is another step in the slow decline, but the devil is in the details of today’s post. Not only in the detail that we didn’t mention the double vision to Columbia, but also in the less important details that Matt scheduled his own appointment, he booked his own hotel room, and he talked to the doctors and understood their explanations. Over the next few days and weeks, these details become significant.

I’ve written before that, as the narrator, I control the direction and feel of the story; I can choose how to frame any particular day. I’ve also promised to show the light when I cannot soften the sharpest edges of this story. And so, as we enter into the razor tipped edges of the last week of August, it’s also important to note this: the day was not all missed exits and missed opportunities. There’s more in the text messages Matt and I exchanged than what I’ve shown in this post. There’s Matt’s good-natured realization that I spoke to his mom and together we’d made plans for him. There’s Matt affirmation that he felt 100% fine after he landed. And there’s always the hope. Between every text message, every smiley face emoji, and every earnest “how are you feeling?” there was always the unwavering belief that we’d defy the odds.