August 21, 2017: Not Yet

When Matt went to work on August 21, 2017, I took G, H, and my two-year-old niece to the lake. I texted a friend and told her that there was no better distraction from the drama of brain cancer then babysitting a very active, very adorable two-year-old.

The day was nothing but chaos. Doctors needed call backs, flights needed scheduling, and three children needed to be nourished and nurtured. By the end of the day, I’d been pulled in so many different directions, I couldn’t think straight. I dragged all three kids to the grocery store to buy milk and ingredients for dinner, only to fill the cart with groceries and realize I’d left my wallet at home. The young teenage cashier was less than sympathetic, and did not see the humor in the situation. I scrounged up an old Visa gift card, which had just enough money to pay for the gallon of milk, and forfeited the rest of the cart.

As the story marches forward and the down cycle continues to pick up speed, the question becomes again what did G and H know? What should should they have known? They saw Matt fall down those two steps. They knew he spent more time upstairs, in a dark and quiet room. They heard me speaking to the doctors, watched me pace the kitchen with the phone tucked beneath my shoulder and ear. They saw the doctor’s name scroll across the caller ID in the car and listened to conversations over speaker phone.

Our incredibly well-intentioned friends brought up the idea of therapy for G and H. They asked whether I thought it was time to take them to see a therapist to discuss all they’d seen and heard, all they’d watched and listened to. My answer was the same every time.

Not yet.

I agreed that G and H might need a therapist if things continued to get worse, if it seemed that Matt’s recovery would be too extensive, or, too improbable. But we weren’t at that tipping point yet. One year ago today, despite the growth of that third tumor and all those symptoms, Matt and I believed his chance of a full, speedy recovery was more likely than his chance of getting worse. For that reason, we didn’t need to start G and H with a therapist to discuss what was happening because they’d seen Daddy plummet into a down cycle and they’d seen him make a swift, miraculous recovery. We didn’t need to start therapy because doing so would be creating a mountain out of a molehill. As if brain cancer was nothing but a nuisance. One year ago today, brain cancer was still simply “Daddy’s headaches.”

When I look back on that thought process, I see the flaw in our logic in a way I didn’t before. Giving G and H an outlet to discuss what they were seeing, whether Matt’s condition got worse or better, would not have been creating a mountain out of a molehill—GBM was always a mountain. Even if poliovirus worked as we’d hoped, brain cancer would never have been just a footnote that we could skip in the story of our lives. No matter how the story ended, on August 21, 2017, we (G, H, Matt, and I) were already changed from the people we’d been before, and there would have been value in giving G and H a safe space to understand all the ways they’d watched their father and mother change, all the ways they’d had to change themselves.

With that in mind, I can’t help but ask myself if maybe I should have been more up front with G and H at this point. Was it actually hope or simply cowardice urging me to say “not yet” to the friends who asked about therapy? Time will tell, I guess. But as I sit here in post-hope, after wiping away another round of tears from little cheeks that should only know light and laughter, I can’t find it in me to regret giving G and H as many unburdened days as possible, giving them a few more weeks of a world in which the word cancer didn’t exist and the worst thing that could happen is their flighty mom makes a scene in a grocery store.

Too soon in this story, they will know the word cancer; they will know the nightmare from which Matt and I tried to shield them. Too soon, they will know not every nightmare can be vanquished with an extra hug and a nightlight. Too soon, they will lose an innocence they will never be able to reclaim.

Maybe the answer—hope or cowardice—doesn’t matter. Maybe all that matters is that the choice was always made with nothing but love and the hope that we’d find a way back to our happily ever after.

August 20, 2017: Unknown Miles

At 6:14 a.m., on August 20th, I responded to the forum messages I’d received in relation to my post from the day before. I wrote: I feel much more confident about Gamma Knife after reading [the responses]. Strangers had written me about their experience with Gamma Knife radiation. Strangers had helped me find that next glimmer of hope in the darkness when I’d begun to lose my grasp on the light.

I learned then that hope can be restored by a stranger sharing an experience, reaching out across an unknown number of miles and reminding you that the world isn’t as lonely as it may seem in the anxious light of early morning.

The text messages from one year ago today tell me nothing except that Matt and I hosted my high school friend and her family. The photos in my phone don’t add anything to the story beyond that fact. My imperfect memory draws a complete blank. Rather than turning to emails from two or three or ten years ago, I turned to my friend who’d come over with her family. I admitted that I didn’t even have a flash of memory.

Not lucky medically, but always lucky to be surrounded by the people who surrounded—and still surround—us. My friend shared her memories, filled in the blank spaces in my mind. Matt grilled. He laughed and hosted and made drinks for his guests. He even fought off an active beehive. The kids swam and drew with chalk and got along like they’d known each other their whole lives.

One of the hardships of brain cancer on the caregiver is this wild pattern of good days and bad days. How could one day be so good and the next so devastating? The unpredictable nature of our days often made it impossible for me to believe what I was seeing on the bad days. When a good day rolled around, it was easier to believe—more reassuring to believe—that I was overreacting. Maybe I was partially overreacting. Maybe I wasn’t.

Over the next five months, I expect to find as many blank spaces in memory as I find razor sharp edges. I think that’s because our world was spinning out of control so fast that I sometimes didn’t stop to make a memory. I ducked my head and steamrolled through the days. (The image that comes to mind is a football player curled protectively over a ball and running to the end zone without looking up, but I should never be allowed to make sports analogies.)

In hindsight, not slowing down was a mistake. In hindsight, not slowing down was inevitable, a necessary mechanism to avoid falling apart.

This project has evolved in ways that continue to surprise me. I’m grateful for all the good I hope it’s doing, grateful for the messages that make me hope I am that stranger reaching across an unknown number of miles to make someone else feel less lonely. But, also, I’m grateful that this project has given me a reason to slow down and piece together the moments I’d failed to turn into memories last year. For myself, and for G and H. Thanks to all those family and friends who’ve never left our side, I have the chance to turn all those moments I didn’t slow down for into stories for G and H. (Today: the time Daddy fought a beehive.) That’s a priceless gift for which I will be forever grateful.

August 19, 2017: Gummy Bears and Chipotle

August 19, 2017 was the first time the nerves and uncertainty and isolation of Matt’s disease overwhelmed me and I reached out to brain tumor caregivers for help. At 6:16 a.m., I posted a desperate message on the brain cancer forums asking for any insight into the reality of Gamma Knife Radiation. I wanted to know what to expect during the days of the procedure, what side effects might strike, and frankly, whether the procedure had any chance of actually working. (CCNU had failed. I needed more than Duke’s word this time to reassure me this treatment would work.)

While I waited for replies to my post, I took the kids to an eye doctor appointment with me. Matt was home—August 19, 2017 was a Saturday—but he was having a difficult morning (more headaches) and I didn’t want to burden him. I bribed G and H with gummy bears and Chipotle and they behaved like angels as the doctor examined my eyes. The story of today illustrates another step in that cruel transition. Slowly, so slowly we didn’t notice, Matt stopped spending time with just G and H. The “we” that was made up of Matt, G, and H, was forced to erode. Not because it’s what Matt wanted, but because his body and brain were betraying him.

At some point, the radiation team did call us to discuss scheduling. Matt and I told them that we had a family vacation—with his parents, sisters, and nieces—planned for the last week in August, and we’d obviously skip the trip if we had no choice, but that we’d love to try and find a way to not miss it. The radiation team understood. They told us they needed Matt for just a day on Wednesday—for prep—and then they’d work out some plan so that he wouldn’t have to miss the entire shore week. In hindsight, a part of me believes the heartbreaking subtext in the conversation was that they weren’t sure Matt would get another family week down at the shore, and he couldn’t afford to miss any day that would make him happy. In hindsight, we were having a quality of life conversation and I never realized it. But maybe that’s just that cynical Post-Hope lens talking.

Originally, we’d had plans to go out with friends that night. When Matt’s symptoms worsened and we learned we were in for more treatment, we decided to amend that plan. Instead of a night out—those were a thing of the past by August 19th—we decided to go to the lake for the afternoon with those same friends. I worried how Matt would do—his morning had been so difficult, he’d fallen just the night before—but he took an Extra Strength Tylenol and seemed, genuinely, kinda fine. He managed to find a little joy and a little laughter in a day and a week that had been filled with anxiety and fear.

In Post-Hope, G, H, and I are gearing to go on the same family vacation at the shore with Matt’s parents and sisters and nieces—and new nephew. G has already sworn that she’ll be too sad to leave her room. (Although, she’s since been convinced to leave her room for “fun” activities only.) H has decided he’s going to be fine because he’s “just not going to think about it.” I imagine the truth for them will fall somewhere in between locking themselves up and not thinking about it. I imagine it will be hard for all of us, that we won’t be able to walk into a coffee shop without being struck by a memory, that the grief waves will roll in as relentlessly as the actual waves. But I also know that there’s value in finding light in the darkness, finding joy while wading through fear and anxiety and heartbreak. It’s an example Matt set time and time again last year, and a legacy worth preserving.

August 18, 2017: Just Two Steps

On August 18, Matt went to work, I took G and H shopping for school supplies and back packs, and Matt and I took turns calling Duke. An appointment for gamma knife radiation had put on the schedule for him and we hadn’t been consulted. We weren’t ready to commit to Duke’s plan without at least discussing the surgery option Columbia had put forth.

In between texting each other updates about our efforts to get through to Duke, we texted about the annual father-kids camping trip in September. There was no question that Matt would go with G and H. That’s hope manifested, right? In between text messages updating each other about doctor calls and test results, we texted about a camping trip with the assumption that Matt would be fine. Difficult now did not mean difficult forever, or even difficult a month from now.

Later that day, Matt and I heard from Duke. The doctor explained that surgery was not a great option for Matt because he’d need to stop the Avastin for at least four weeks before surgery. (Once again, that drug that I swore Matt would never take, that had been marketed to us as nothing but an uber steroid, closed doors on potential treatments.) The problem would be inflammation, before surgery and after surgery. Her rationale made sense to us. And besides, Duke was still the only one offering a cure. Although in hindsight, I wonder whether at this point the Duke doctor, who had never spoken the words “quality of life” to us, was still offering a cure via poliovirus, or if even she knew a cure was no longer a possibility for Matt. I have to begin wondering now, through the cynical lens of hindsight, if at this point, Duke was beginning to lose sight of Matt as a patient, and seeing only Matt, the statistic (or footnote) in their clinical trial report.

That may be unfair, but as Matt’s disease progressed, it was a thought that gained more and more traction in my mind. But maybe I’d already started looking to cast someone in the role of villain.

The Duke doctors told us the radiation oncologists who would be performing the gamma knife radiation wanted us at Duke from Wednesday to Wednesday of the next week. My stomach bottomed out. There were the logistical concerns: the kids were still on summer break, we were supposed to be leaving for the shore for our annual family trip, and much of the support system we relied on for help with the kids was away during that week. But the heartache I felt wasn’t at all logistical. It was simply wildly irrational. The thought of leaving G and H for a week—even though we’d had to leave them before—was unbearable. I told Matt maybe we could bring them to Duke with us. He’d receive radiation in the mornings and then we’d explore North Carolina in the afternoon. (Clearly in my stress I’d become delusional.)

In Post-Hope, I have a better understanding of the reluctance to leave G and H. I know when things feel impossible, when I feel like I’m losing my control over reality, my priority becomes protecting G and H, shielding them from a storm, and somehow, whether true or not, it feels easier to do that when they are right beside me.

On August 18, 2017, we decided not to make any travel and scheduling decisions until we spoke to the radiation oncologists, who were supposed to call the next day.

That night, Matt fell down the stairs. Just two steps, and he landed onto a carpeted floor. He was fine, upset with himself, but fine.

In true Matt fashion, he’d fallen, and he’d gotten right back up.

August 17, 2017: Six Weeks Lost

A lot happened in yesterday’s post. Mistakes and disappointments and that anger ruled the story. But all the work, all the difficult decisions, still waited for us.

When we arrived home on August 16, 2017, Matt went upstairs to nap. I took out my computer and wrote what I described as a “sternly worded email” to Duke. I listed out Matt’s most obvious symptoms so there would be no confusion as to what exactly we were seeing at home. I reminded them that we didn’t have the luxury of time at this point—Matt was due for either his next Avastin and/or next CCNU within a week.

Duke responded within a few hours of confirming they’d received the MRI. Columbia also responded within a few hours of receiving the July MRI. On August 17, 2017, we were again confronted by two doctors, looking at the same images, and seeing two different truths. (At this point, we’d stopped conferring with Hackensack. We understood they did not agree with Matt’s treatment plan and did not want to be involved with our chosen path.)

Duke reviewed the MRI and told us that the tumor treated with poliovirus (in the left parietal lobe) was responding to the poliovirus and breaking apart, but the tumor in the right parietal lobe, had grown. Duke recommended gamma knife radiation* on that right parietal lobe tumor.

Columbia looked at the same images and told us both active tumors in the parietal lobes looked bigger. The doctor at Columbia suggested surgery to remove one of the tumors and then gamma knife radiation on the other.

Matt and I were again faced with a choice of who to believe and what to do.

Two things were certain. One, we’d lost six precious weeks of treatment time on CCNU, a drug Hackensack had warned likely wouldn’t work on Matt. (Remember, his tumor was unmethylated and hadn’t responded to the Temodar.) And, two, whatever we chose to do next would not be easy, on Matt or the kids or anyone.

August 17, 2017 was the last day of camp for G and H. I took them to the lake to play with their friends. As I watched them running around, carefree and full of potential, I fought back tears. Matt would be fine. The poliovirus would work. Of that I had to be sure. But I was also sure that the road ahead of us was not going to be smooth or straight. Whatever decision we made would mean more appointments, more tests, more recovery and more side effects (mental, physical, emotional) for Matt. I knew whatever road we chose meant somehow finding a balance between keeping things as normal as possible for G and H—letting them enjoy the end of their summer, prepare them for the school year—and doing whatever needed to be done to bring Matt back to himself. I felt my life cleaving into two separate halves—the life in which I was a stay-at-home mother with two kids who volunteered for the PTA and brought fun snacks to the soccer field and the life in which I was the wife of a brain cancer patient who was about to begin a fifth attempt to eradicate a brutal disease—and I hoped I’d be strong enough to live those two lives for all the people that counted on me.

We didn’t make a decision on August 17, 2017—there were a number of nuanced factors to consider and more specialists to confer with—, but I texted a friend and told her I knew we’d end up following through with Duke’s treatment plan. Duke believed poliovirus was working and we believed Duke knew something the other doctors didn’t. We believed Duke held the key to the cure.

Once again, that saying: At Duke, there is hope.

And that was always the deciding factor.

*Gamma knife radiation is targeted radiation therapy. I’ll go into more detail in the next few days.

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My sternly worded email. In hindsight, it’s not quite that stern.

August 16, 2017: The August MRI

August 16, 2017 brought with it a number of firsts. Most notably, August 16, 2017 was the first time Matt went to Columbia for a MRI. All the most recent MRIs had been performed at Duke, and prior to that, at Hackensack. One year ago today, we were introduced to (reminded of) the idea that Columbia is, at heart, a city hospital and prone to city delays and malfunctions and overcrowding.

A with and without contrast brain MRI usually takes about an hour. In the fourteen months Matt had been a brain cancer patient, his MRIs had never exceeded that one hour mark.

Matt’s MRI was scheduled for 10 a.m. in the basement of the Milstein building of the Columbia Medical Center. The basement meant no phone service, no natural light, and no fresh air. When one hour turned into an hour and a half, I stepped out of the basement, took the elevator back up to where my phone received a signal and texted Matt: You’re not done and walking around somewhere right? I’m waiting for you down in the basement.

I simply couldn’t believe that he could still be in the MRI. I assumed he must have gone out a different door, though the receptionist assured me a dozen times that there was no other door.

When Matt finally finished with the MRI, at 12:23—a whooping two plus hours—he told me the technician kept stopping the machine and ordering more tests. I remember my breath catching on the spark of worry that had been ignited. Two thoughts went through my head. One, what did the technician see that warranted the extra testing? And, two, what if Matt isn’t telling me the truth? Not because he was lying, but because his brain had not accurately processed what had happened in that MRI.

Whether Matt’s account of those two hours is accurate, I will never know. I do know that the stress of wondering what the MRI would look like crashed into me with a thousand times more force than it had before.

The day only continued to fall apart after that appointment.

After bloodwork and filling out the paperwork to request a copy of the MRI to send to Duke, Matt and I went to see the doctor. A nurse arrived to take Matt’s vitals, including his temperature. His temperature was 97.7. I asked the nurse why it was so low. She said maybe he was cold; the air conditioning was on. I accepted the answer and didn’t ask again until the next appointment, when his temperature was again low.

After waiting for a not unreasonable length of time, the Columbia doctor walked in. We didn’t expect her to be able to give us a full picture. After all, we believed only Duke was capable of reviewing a MRI containing a tumor treated with poliovirus. But we hoped to know whether any tumors disappeared or shrank, or—in the worst case—whether any new growths had appeared. The doctor arrived with a grim expression on her face. She told us there was a new tumor.

The sound when your world falls apart, again, is silence. A buzzing, roaring, nauseating silence.

The Columbia doctor turned to the computer screen to show us the images, to compare the previous MRI with the one performed that day. It was then that Matt and I realized she was looking at the MRI from May, when Matt never had a third tumor, rather than the MRI in July, when the third tumor had appeared. When we reminded her that we knew about the third tumor in the right parietal lobe—and had, in fact, consulted with her on the best course of action for that tumor—she backtracked her statement that the MRI looked worse. There was no new tumor, only the known tumors in the left and right parietal lobes. And without the July MRI (which Duke had been supposed to send), the doctor could not tell us if the tumors in the left or right parietal lobes looked at all smaller. All she could tell us was that neither tumor had disappeared.

The doctor performed the standard cognitive and physical tests. I do not remember how Matt did on the tests, whether he excelled on the memory portion or failed the math portion. I know that Matt’s wit and humor and spark were as bright as I’d seen them in days in front of the doctor. He always managed to be the best version of himself when examined—that amazing brain.

We ended with a discussion of Matt’s bloodwork. Apparently his platelets and white blood cell counts were low as of August 2nd, likely thanks to the chemo. The doctor noted that Duke, who had prescribed the chemo that could impact Matt’s bloodwork, had not been reviewing his numbers. We learned on August 16th that though Matt had been traveling to the city for weekly bloodwork, NOBODY had been reviewing his numbers.

After the emotional roller coaster of the day, we left Columbia infused with a rage I’d never felt before.

Duke had failed us—failed to send the MRI and failed to review the blood work. (Matt was their patient, with their experimental drug floating around in his head, and CCNU was the drug they prescribed. He should have been on their radar.) Columbia had failed us—we lost all confidence in that doctor after she arrived to the appointment unprepared. I’d failed us, by assuming that Matt was as important to them as he was to me, that he was more than just a patient to all of them.

Maybe that wasn’t fair. Maybe our rage was a result of a difficult morning, a challenging week, and a growing desperation. Maybe the Columbia doctor was having her own bad day, pulled in a dozen directions at once, and we shouldn’t have assumed based on one bad visit that she didn’t want to be anything but a stop on the way to more Avastin for Matt. Maybe we shouldn’t have assumed, based on Duke’s reputation and the seriousness of Matt’s disease, that they were paying attention.

What’s left after the last ember of hope fades away? Hopefully, forgiveness.

August 15, 2017: Fantasy Football

As awful as the day before had been, the day we lived one year ago today was fine. Relatively fine. Matt went to work—headache and confusion free. But that doesn’t mean he was completely himself. By this point, more often than not, parts of Matt were simply missing. That flash of humor, the quick smile and the razor sharp wit that I had fallen in love with on our first date thirteen years ago, were victims of the tumor’s growing aggression. That fact (opinion? observation?) isn’t reflected in text messages or emails. It’s just my truth, the way I remember the days before the August 16th MRI.

The night of August 15, 2017, Matt went to a fantasy football draft. Every year since the year I met him, Matt was involved in fantasy sports, heading up a league or two or three. He was proud of the fact that he’d started playing fantasy sports in high school, before the Internet and fantasy-sports-dedicated websites made fantasy sports mainstream. (I think he thought of himself as a pioneer of fantasy sports. Which is why I couldn’t honestly tell Matt’s story without at least one fantasy sports post.)

Matt came home around 11 that night. I wasn’t at the fantasy football draft and Matt was not a reliable source to gauge whether he was himself or not. (He could recognize a blip or a headache, but it was—understandably—impossible for him to see that he wasn’t himself, that some spark was missing.) So, I have no idea how Matt acted at the draft. I have no idea if anyone noticed anything slightly off about him. I do know it doesn’t matter. Matt came home happy. He’d had a good night. He’d come home ranting about the bad picks he’d made—a rant I’d heard after every draft, every year.

August 15, 2017 is a last. It’s the last day before the August 16th MRI. It’s the last day before our fight against Glioblastoma became more complicated—another treatment, another set of doctors, another swing at a cure with a bat that was becoming increasingly brittle and splintered.

Matt wasn’t able to finish out any of the fantasy football leagues he’d started. Sometimes, because he was hospitalized, sometimes because his ability to use his phone and computer were destroyed, sometimes because he didn’t possess the focus and cognitive ability required to participate. During those periods when he couldn’t function the way he wanted, he often asked me to help him set his lineup, or whatever weekly work is required in fantasy sports. I was happy to help Matt in every way, but in this I balked at the request—what did I know about fantasy sports? (The answer is less than nothing. In the days before brain cancer, Matt frequently teased me for zoning out the moment he started discussing fantasy sports.)

I’ve said that Matt and I weren’t lucky medically, but so, incredibly lucky to be surrounded by the people and community that surrounded us. When Matt couldn’t participate in the activity he loved, when I was completely incapable of helping him participate, so many of his friends swooped in—without being asked—to help. They called to talk fantasy sports, set his lineup for him, took over for his league commissioner duties…and did so, even when sometimes Matt’s confusion got the better of him, when maybe his inability to see that he wasn’t himself caused him to be less than grateful for the help.

I will always be grateful to Matt’s friends who swooped in to give him that normalcy, give him the activity he loved, when I couldn’t.

When the days got terrible, when there was nothing anyone could do to help and we felt the darkness closing in on us, this small act of friendship and kindness was the ember of light we needed to fight another day.

August 14, 2017: A Crisis Or Not

August 14, 2017 marked the beginning of G and H’s last week of camp. That meant it was time for me to start getting to work on the endless to-do list I’d put together for myself in the beginning of the summer. (Better late than never?) I ran errands, organized closets, and began cleaning out the space that we hoped to turn into an office. The day was relatively productive, until about 1:30.

At 1:30, Matt came home from work with a severe headache. I greeted him at the door with two Tylenol and he went straight upstairs to rest. When I spoke to Matt’s dad (either while Matt was on his way home or after Matt had fallen asleep) Matt’s dad told me that Matt was pretty confused in the office. I don’t remember exactly how he was confused—my guess is that the things he said didn’t quite follow a logical thought pattern—so I can’t give any honest details or examples to explain what I mean when I say confused.

Ultimately, how he was confused is irrelevant. Simply the fact that he left work is crucial. For the last year, despite other bad days, Matt had always found a way to function at work.

I called Matt’s doctor at Duke to tell them about the severe headache and confusion. By 2:33 I hadn’t heard anything back. I texted a friend that I was worried I’d have to take Matt to the emergency room. But I didn’t know. I spent the next hour pacing, Googling, and sneaking into the bedroom to make sure Matt’s chest was rising and falling with breath.

At 3:30, Matt was still sleeping and I still hadn’t heard anything from Duke. I called and left another message. I give up the pretense of sneaking into the room. I folded laundry outside the bedroom door, read a manuscript by the bedroom window, and found any excuse to be within a moment’s reach of Matt.

In retrospect, I can see that I condensed all the un-Matt-like behaviors and blips and headaches over the past few weeks into this particular headache and long nap. In the moment, I was not that clear headed. I felt simply terrified and abandoned.

At 4 p.m., the nurse at Duke returned my call. I remember the intense relief I felt to see the Duke number flash on my phone, to hear the nurse’s voice on the other end of the line. All the stress and anxiety of the last two and a half hours poured through the phone line as I gave her a detailed account of everything. With unwavering practicality and a practiced calm, she told me to let Matt sleep for another hour and to take him to the emergency room if the pain wasn’t gone by the time he woke up. The fact that I didn’t hear panic in her words, calmed the panic in my world.

At 4:37-ish, Matt woke up. His headache was gone.

A few minutes after Matt woke, the kids came home from camp and it was as if nothing had ever happened. No confusion. No extra Tylenol. Crisis wasn’t averted because there was never a crisis to avert. I remember chastising myself for letting my imagination get the better of me. I remember thinking I’d worked myself up over nothing. I remember thinking I couldn’t trust myself anymore.

I don’t remember if I told Matt how panicked I was. My guess is I told him nothing, because why worry him.

In the grand scheme of the day, the total time spent in panic mode was about three hours. I spent two of those hours waiting for a call back. Barely worth mentioning. And also, somehow a lifetime. In those two hours, I felt the life I knew slipping away. Those two hours waiting for a call back illustrated a problem with no easy solution. Brain cancer is a disease that is impossible to navigate alone. Blips and headaches and un-Matt-like behaviors became part of the daily routine, and yet, so often there was nothing any doctor or nurse could do to help, except maybe make us feel less alone in the battle. Sometimes that was all we needed.

Matt and I never lost sight of the fact that we were not the only patients waiting for a call back or waiting for the doctor to review a MRI. We understood the doctors and nurses were working tirelessly for the benefit of all patients. We also just began to feel abandoned when we most needed someone on our side. Maybe that’s not fair, but it’s true, and it becomes a central theme in the story as our world spins out of control.

The hopeless truth is the ending of this day wouldn’t have changed our story’s ending, at all. The hope-filled truth is that no matter how this day ended, we wouldn’t have stopped believing we were destined for a happily ever after.

August 13, 2017: Pieces in a Jigsaw Puzzle

My email reminds me where we went to dinner with Matt’s parents on Sunday, August 13, 2017. My text messages remind me that Matt didn’t play well during the casual tennis match he’d scheduled with a friend that morning. The pictures only confirm what the emails and text messages already described.

I have a faint sliver of a memory from August 13, 2017, a flash of a memory, hardly enough to even mention, and certainly not enough to tell a story. Meaning, my imperfect memory adds nothing to the story.

I’m anxious today, August 13, 2018, to start writing about August 16, 2017 and the days that came after. Not particularly because I’m anxious to re-live those days—I can re-live those days without reviewing text messages and emails—but because so many details from so many days are scattered. As we scrambled to make decisions—always reactive, always one step behind the tumor—the days rushed past faster than my mind could commit everything to memory. Now, I am left with days that are burned like brands into my mind, but also flashes of memory that float around, unanchored to any time or place or space.

I find myself wondering whether a certain conversation happened before or after an event, and wondering whether the timeline in my memory has been altered by that ever-present tendency toward the overdramatic. I find myself trying to place a particular flash of memory into context, into a time and place and space. The visual that comes to mind is a jigsaw puzzle. The puzzle is complete enough to show the image, but a few key pieces are still waiting to be fitted into their spots.

I was going to write that I’m often struck and left breathless by a flash of memory at the most random and unpredictable times. And then I realized that wasn’t quite true. It had been true. Before I started writing our story, flashes of memories, unmoored by context, would attack at any given time. Something as simple as checking out at the grocery store might send me reeling back in time, toward a moment in the past with no obvious correlation to the present. But since I started writing, the flashbacks have settled. They come, but less frequently, and usually with an obvious trigger.

Maybe that’s a sign that I’m learning to live around the grief, which I’ve heard is what happens—the grief doesn’t fade, life just fills in around that pocket of emptiness. That’s the most rational answer. But I never promised to be rational.

I could almost believe the unmoored flashbacks have stopped attacking at any given time because writing them out—even the promise of writing them out—has settled those volatile memories. The flashes of memory don’t need to attack because a part of me knows that I will pick each one up at some point, acknowledge it, examine it, and give it a time and place and space. Any good writer knows there’s value in context.

But I could also almost believe that telling the story, forcing those flashes of memory out of my head and into the world, makes them less volatile. I could almost believe I’m not being attacked by the unmoored flashes of memory because I’m not living the memories—completing the jigsaw puzzle—alone.

And for that I’m endlessly grateful.

August 12, 2017: Simultaneously

We had a busy day planned on Saturday, August 12, 2017. H had a friend’s birthday party, we had a meeting with a contractor to finalize details on a home renovation project, and we had plans to go car shopping (because my car’s lease was up and I was way over mileage…a five digit number of mileage). That night, we had dinner plans with friends.

Matt woke up and he wasn’t quite himself. The exhaustion and flash headaches had become more noticeable, more intrusive, but also, there was something slightly off. Something that impacted his logic and humor just enough to simultaneously raise my panic and make me wonder whether I was imagining things.

During the meeting with the contractor, I remember Matt made statements that weren’t quite relevant, he asked questions that had answers he already knew, and his tone was just slightly harsh, not rude, but not in line with Matt’s usual friendly, joking tone. I remember looking from him to the contractor and wondering whether I should intervene, pull the contractor aside and explain that Matt had brain cancer. I didn’t, because I remember thinking that felt mean, like a betrayal to Matt. Maybe it also felt like acknowledging and admitting something I wasn’t capable of admitting.

I don’t remember what we (G and I) did while H was at the birthday party. I don’t remember what Matt did while he had the house to himself. We didn’t text even once in the two and a half hours (or so) that I was out of the house.

I do remember car shopping together later that afternoon, and I remember looking from Matt to the salesman and being so impressed with Matt’s negotiation skills, his business acumen and his wit. He was back to himself in a way that negated the morning.

When we left the sales office, Matt was struck by another headache. It lasted just a few minutes longer than the ones prior. He asked me to cancel our plans for the night. I did. And I knew doing so was insignificant—it was just one night,—but simultaneously momentous. More so than the weekend before, it was the first time Matt admitted he needed to slow down. It was the first time I agreed.

The day was marked by highs and lows. Matt was sometimes off and sometimes not, sometimes himself and sometimes someone I couldn’t recognize. After this point, when friends asked about Matt, I never knew how to answer. We were simultaneously fine and falling apart. Our world was simultaneously burning to ashes and blazing with the promise of cure that would eventually work.

Poliovirus would work. Of that, we were unwaveringly sure.

About that, we were incredibly wrong.

Contradictions. The contradictions of brain cancer are exhausting and isolating and so very impossible to explain, even to yourself.

But in the space between every contradiction, for us, was hope. And that was reason enough to simultaneously slow down and keep going.