November 30, 2017: Three Hundred Days

One year ago today, Matt started whole brain radiation in an effort to treat, or stall, or slow the growth of a tumor that had spread all throughout his brain. It was the first time he’d done anything to treat or stall or slow of the growth of his disease since September 6th, when he had his last Avastin infusion. Everything that we’d done since September 6th had been an effort to treat or understand symptoms.

Why the two month pause in treatment? It’s a question I asked myself often when Post Hope started, when I began this project and outlined our year. The answer is two fold. One, Matt wasn’t strong enough to undergo treatment. After the shunt surgery, his body and mind had been too weak for treatment—surgery or chemotherapy or otherwise. And two, we (Matt, me, the doctors) didn’t know what to do next. We’d discussed brain surgery to remove the tumor in the left parietal lobe. We’d considered a chemotherapy or two. But we wanted to understand how the lesions on Matt’s spine and ribs, the glowing yellow PET scan, fit into the picture before rushing forward into a plan. Matt’s disease moved faster than any of us could have predicted.

So, the what ifs pour in. What if we hadn’t spent time on PET scans and bone marrow biopsies and thyroid biopsies? What if we’d scheduled a surgery to remove the tumor for the end of October? Would the ending of our story have changed? The truth is that I don’t know, but I don’t think so. Because I know how our story ends. I know the final, heartbreaking plot twist. The better question is would our third act have been different? Could we have avoided some of the heartache? The truth is, again, that I don’t know. Maybe. Maybe it would have been an easier third act. Maybe harder.

We arrived at Columbia a bit late (thanks to a surprise traffic jam) and took the elevator down to the basement floor of the building which housed the radiation machines. We checked in and waited, surrounded by other patients, some who were alone, some who were accompanied by a friend or family member. We did not feel young and naive. We were worn and weary, maybe a little jaded, but full of hope.

We didn’t have to wait long before Matt’s name was called. He waved goodbye to me and followed the nurse into the back room where family and friends weren’t allowed. I don’t know how he felt when he saw the radiation machine, when he saw the mask—the plastic mold of his face that attached to the table to ensure that his head was in exactly the same position from day-to-day. Frustration or defeat, or, maybe, hopefully, determination.

Today marks 300 days in Post Hope. As with all the milestones we’ve hit in Post Hope, three hundred days feels like a lifetime and a heartbeat. For the last three hundred days I’ve found comfort by spending time in the past, sometimes tunneling so deep into the past that I can’t keep track of the days in the present. For the last three hundred days, I’ve found comfort in keeping everything–down to the half-full (never half-empty) Poland Spring bottle on Matt’s nightstand–exactly as it was when Matt walked out of the house on January 15th.

It’s what I needed to do to survive three hundred days in Post Hope. It’s what I need to do to survive. But I recognize, have always recognized, that one day I may need to do more than survive. I suspect the real Matt (pre-GBM Matt) might have wanted me to do more than simply survive.

I’m not ready to do more than survive. Not yet. It hurts a little too much to do more than survive. But yesterday, on the heels of two exciting new opportunities, after hours of internal debate, I put Matt’s Poland Spring bottle into the recycling bin, telling myself it doesn’t mean I love him any less. It means that I’m surviving, and maybe, hopefully, eventually thriving.

November 29, 2017: Unfit and Unqualified

Matt and I had a full schedule at Columbia on November 29, 2017, the prep day before the official start of whole brain radiation. We had a MRI scheduled, followed by an appointment with our neuro-oncologist, followed by a radiation simulation—comparable (the way I understood it) to a dry run of the actual radiation.

We arrived in the city and checked in for the MRI only to be told we weren’t on the schedule. The receptionist sent us to another building. Matt and I walked the city block to the other building and were told we didn’t have an appointment there, either. We had reason to be frustrated. Not only was traipsing around the city difficult for Matt, but our schedule was so tightly packed that if one domino fell, the entire day could fall apart.

But Matt also wasn’t Matt one year ago today. He was frustrated and irritable and he blamed me for the MRI mixup. In truth, I’d mixed up enough reservations in our lives that I couldn’t truly rule out the possibility that I’d somehow mixed up this MRI. (Side note: Eventually, we learned that the mixup was not my fault.)

I called the neuro-oncologist’s office and spoke to one of the two receptionists who scheduled appointments for the doctor’s patients.

Columbia’s automated phone system was a daily frustration. The robotic voice frequently cut out. The system often hung up on me. Sometimes, the automated system just failed to answer. Too many times I found myself screaming in frustration as I pressed redial again and again and again. But when I did reach a person, I got in touch with two of the kindest receptionists I’d met during our brain cancer battle. They knew Matt and me by first name. They never complained when I asked them to, again, comb the schedule for a more convenient time, because  they understood that we had two kids we wanted to rush home to see.

When I called, nearly in tears—because Matt wasn’t Matt (there was too much anger in his expression and not enough love and humor), because we’d been ping ponged from building to building for the last hour, because it felt like we were losing our battle against Glioblastoma and we couldn’t handle anymore delays—the receptionist told me she’d handle it. She put me on hold and, after a considerable wait, returned to let me know she’d found us a MRI appointment. She said we’d make the timing of everything work and she’d be there to help.

Two hours later, Matt had a MRI. Thirty minutes later, his shunt was recalibrated. Thirty minutes after that, his radiation simulation was completed. We arrived in our neuro-oncologist’s office for our 12:30 appointment at 3:45, only to learn that the doctor was in a meeting until 4:30.  We chose not to wait. We had a handful of appointments already scheduled for the end of the week and the days following.

One year ago today, I remember sitting on a bench in a sun-drenched lobby feeling completely unfit for the role I’d taken on. I didn’t have Matt’s ability to charm people to get us to the front of the line. I wasn’t qualified to be in charge of Matt’s care. I needed Matt’s help—the real Matt.

One year ago today, we made it where we needed to be. We did the things we had to do.

In Post Hope, with the power of hindsight behind me, I realize most, if not all, caregivers probably have this same moment, this same who-thought-it-was-a-good-idea-to-put-me-in-charge moment. And I suspect most, if not all, caregivers follow up that moment of doubt by getting done all the things they need to do in the hope of saving the person they love from a vicious disease.

The truth is no one is prepared or qualified. The truth I learned after too many days of feeling helpless and unfit is that love, and a little hope, are enough.

November 28, 2017: Bone Biopsy

One year ago today, on November 28, 2017, Matt and I drove to Columbia for a bone biopsy.

Almost exactly two months earlier, on September 29th, in a fit of paranoia, I’d dragged Matt to the emergency room for a chest x-ray to make a desperate attempt to pre-empt the next disaster. The trip to the emergency room did nothing to prevent the next down cycle (hydrocephalus), but the chest x-ray revealed sclerotic lesions on Matt’s spine and ribs. Two months later, after an inconclusive bone marrow biopsy on October 13th, an inconclusive thyroid biopsy on November 2nd, and an inconclusive—and alarming— repeat PET scan on October 24th, we were left with one final test.

The Columbia doctor had hoped to avoid a bone biopsy. We wanted to understand Matt’s sclerotic lesions—ensure there was nothing sinister going on in his bones—but a bone biopsy was a long, painful procedure, and theoretically, unnecessary when a PET scan or bone marrow biopsy or thyroid biopsy could give us the answers we sought.

But Matt was a mystery. Two months had gone by and we’d learned nothing, done nothing. Two months after learning about the lesions on his spine and ribs, after every other test had been exhausted and unhelpful, we still needed answers. Though I hated the idea of putting Matt through more tests I wanted to know what exactly we were dealing with. If there was a secondary cancer, I wanted to face it head on.

We arrived at Columbia at noon for pre-procedural paperwork. I don’t remember much of the paperwork. I don’t remember Matt going in for the procedure or what I did while I waited for him to finish. I do remember the hours after the procedure, the kind nurse who found Matt a sandwich and offered one to me, who rushed us through the discharge procedures because she knew the difference between getting on the George Washington Bridge at 4:15 versus 4:45 could mean an hour in traffic, who gave me a name for what Matt was experiencing.

Expressive Aphasia. Every time Matt said one word but meant another, every time he couldn’t find the word he was looking for, every time he grew frustrated that I wasn’t understanding his meaning fast enough—all of that was expressive aphasia. Matt wasn’t suffering from a handful of symptoms. He was suffering from one, which manifested in a variety of ways.

There’s a power in naming things. Giving something a name makes it real, makes it tangible and manageable and less terrifying. Giving Matt’s symptoms a name made them less isolating. The subtle logic behind the relief I felt when the nurse named Matt’s symptoms could best be explained like this: If the symptoms have a name, then Matt isn’t the only one who’s suffered with these symptoms. Our singular experience is at least somewhat universal; We’re not the only ones who’ve faced these struggles.

Essentially, giving Matt’s symptoms a name reminded us that we weren’t alone.

Living with Glioblastoma, providing care to a patient with Glioblastoma, is an intensely isolating experience, even when surrounded by family and friends. Every moment is fragile. Every detail of life is flipped upside down and turned inside out in a way that’s impossible to put into words–not unlike Post Hope.

One year ago today, a nurse told me a name and made our experience feel more manageable and less lonely. It was an invaluable gift, one I’m grateful for even a year later.

November 27, 2017: Last Free Day

November 27, 2017 was the last free day Matt and I had before we started a new daily routine. After this day, I knew our mornings would be consumed by the tail end of a.m. rush hour traffic and our afternoons with the race to drive home and eat lunch before the school bus deposited G and H. I didn’t know what to expect for the time in between.

The doctors had told us Matt’s actual time in the radiation machine was minimal. Mere minutes, usually. And we could plan to be out of the city within the hour. Unless, they warned, the machine broke. Then, all bets were off. We’d been in the cancer world long enough to know we should plan for delays.

I spent the day chopping vegetables, prepping foods for the week, and making a time-consuming butternut squash noodle-less lasagna in a desperate attempt to trick H into eating a vegetable—a saucy, cheese covered vegetable, but a vegetable nevertheless. (He took one bite. A small victory.)

I don’t quite remember what Matt did while I labored in the kitchen. Likely he napped in his corner seat on the couch. Probably, he turned on the television, though he struggled to see and to follow plot lines on sitcoms. He couldn’t text—reading was challenging. He couldn’t work—the deficits in his memory and cognition made work  impossible. He had cognition homework (though we’d put a pause on cognition therapy until after the new year)—but the sheets were nothing but sources of frustration for him.

I write so often about how I missed Matt even when he was right in front of me. But I wonder often if Matt missed himself. Missed having the mental aptitude to open a news article and read it, or log into his Facebook page, or set his fantasy sports line up. To crack a joke or play with his kids or feel in control of the world around him. All the little things that make up a life.

The cruelty of brain cancer. He was stripped away from himself. The things he enjoyed became impossible.

And Matt never complained. Never raged against the injustice, against all the disease was slowly stealing from him. Gracefully and bravely.

I’ve been struggling to piece together our days lately—which means I’ve found myself rambling just to have something to say. Today is a bit of a ramble. Because the truth is, my record of these days is sparse, very nearly non-existent. The emails and text messages between Matt and me vanished—because he couldn’t write and we spent the majority of the day together, anyway. We weren’t taking many pictures, either. I have only my text messages with a few friends.

It’s the lack of pictures that struck me today. Starting in and around September, I stopped taking photos to chronicle our (our family of four) activities. That feeling—the I need to capture this perfect moment with a photo feeling—had vanished along with the ability to wake up without fear of what the day might bring.

After February 3rd, a family member noted (not critically) that we should have been taking more pictures, chronicling treatments and progressions, documenting Matt, his spirit, his bad jokes, his facial expressions, before they vanished. We should have tried to save some of Matt. We didn’t for the same reason we never discussed mortality, the same reason we left so much unsaid. All that undiluted hope.

I’ve said hope is a two edged sword in that way.

This retrospective, written-word hindsight project is the best I can do now.

Months again, when I started this project, I would have followed up the above sentence with this line: “I hope it’ll be enough.” As in: This retrospective, written-word hindsight project is the best I can do now. I hope it’ll be enough.

But now, firmly planted in the third act of this story, with more than 150,000 words written about Matt and his battle, I don’t have to hope I’ve saved some of Matt—his humor, his spark, his spirit, his courage—for me, and G and H, and everyone else who loved (loves) him. I know (I’m fairly certain, at least) that I have. Not in the way a video or picture could. But in the best way I know how.

And that’s somewhat comforting. Because too soon this story is going to take another sharp downward turn and it’ll be impossible to see Matt. Some of the events will be hard to share and read and re-live. And the way I made it through these days was to remember the real Matt, the Matt I’ve chronicled and documented and shared. Hopefully, that memory will be enough to soften the sharp edges of the next two months.

November 26, 2017: When, Not If

One year ago today, we (our family of four) went to see the movie Coco. Later that night, I texted a friend and told her the movie was great, but it had been a very long afternoon. I didn’t go into detail about the afternoon over text message. Which means, one year later, I cannot say exactly what made the afternoon feel endless. Maybe Matt and I argued? Maybe I was struggling to split my time between Matt—who refused help at every turn—and the kids—who had no one else to turn to when they needed help? Maybe we were simply on edge because, in a few days, Matt would begin a treatment that would send radiation into his entire brain, and not only was the treatment not guaranteed to work, but the side effects could exacerbate all his symptoms.

I truly don’t know.

But I do have an insight into Matt’s thought process during these final days before he began an intense hope-filled effort to treat an incredibly rare progression of Glioblastoma. I texted a friend and told her that Matt constantly made comments about our future that started with “when I’m better” and “when I can drive again.” When, not if. I remember desperately wanting to believe in the future he painted, one in which he was better and he could drive. I remember feeling relieved by his unfaltering positivity and, at the same time, worrying that he wasn’t quite grasping the severity of his diagnosis. Holding two opposing thoughts at once. The contradictory nature of brain cancer.

I wanted him to be wholly and completely positive, because I believed anything else would invite negative energy. (Not logical, but honest.) But I also wanted him to understand the risks and rewards so that I could be sure we were making decisions together, as a team—because the idea that I might be making life or death decisions for him (rather than with him) was too great a responsibility.

When I started this post, I thought I might try to determine whether Matt was fully aware of the severity of his disease progression. But actually, as I sat to write and considered all that I’ve written in the past eight months, I think the truth, whether Matt was aware or not, wouldn’t have changed the way he spoke about our future.

From the beginning, he balanced realism with unfaltering hope. I noted that early on he spoke with frankness about his disease. But I’ve also noted, more times than I can point out, moments when Matt made plans for the future, chose a path because it offered the most hope not the most certainty.  He knew he might only get two years (based on the statistics) but he believed he could beat the odds. He believed in our future. In looking back at all I’ve written, I think from the beginning Matt always understood the risks better than I did, and nevertheless chose to say when, not if.

November 25, 2017: Ludicrous and Surreal

I’ve admitted that sometimes I let fear and stress and exhaustion get the better of me, of my reactions and responses. I have a feeling—though the memory is hazy—that November 25, 2017 was one of the days I didn’t respond with kindness or understanding.

One year ago today, at 10:22 a.m., I texted a friend and told her that I’d just caught Matt walking up the stairs with our biggest kitchen butcher knife in order to open a small box of batteries, which he was also bringing up the stairs.

After reading the text messages, I vaguely remember this morning, finding Matt halfway up the stairs, the kitchen knife pointed up. I more than vaguely remember the surge of panic and terror. Matt was unsteady on the stairs on a good day. I often casually walked behind him or in front of him hoping to catch him if he fell (or, more likely—given that Matt was bigger than me—lessen the impact of his fall by falling together). To walk up the stairs with a butcher knife in hand for no rational reason was inviting danger. I told him as much and his anger surged. (Likely in large part due to the Dex.)

Back in September, I introduced the idea that Matt and I were arguing—bitterly and frequently—which was something that we (the real Matt and Elaine) never did before entering the world of Glioblastoma. I haven’t written much about those arguments, mostly, because I don’t remember them all. They were largely irrational and circular and forgotten within minutes. The argument on November 25th was no different.

I vaguely remember my voice sounding too shrill, too desperate during the argument that ensued. Matt couldn’t understand why I didn’t want him bringing a box of batteries upstairs to be opened with a large kitchen knife that he was also bringing upstairs. He was angry with me. I remember my own temper flaring, too, along with frustration. Because it seemed obvious to me that Matt shouldn’t walk up the stairs holding a butcher knife. How could Matt not agree with me now that I pointed it out? How could we be arguing about butcher knives and batteries? The entire argument was ludicrous and surreal, in my opinion.

Then again, in any argument, doesn’t each party always think he or she is right? The nature of an argument is the clash of two firmly held opposing beliefs. One year later, a tiny part of me can’t help but wonder whether I overreacted.

The difference between the argument on November 25th and all the other ones we’d had is that this argument is memorialized in text messages. After the argument, I texted a friend because I needed a lifeline back to a world that wasn’t warped by Glioblastoma. I needed to confirm that I wasn’t wrong in asking Matt to open the batteries downstairs, ideally with scissors. Because Matt had been so angry and passionate and sure that everybody walks up stairs with knives to open batteries that I’d begun to doubt whether I was rational. Essentially, I needed confirmation that the sky was still blue and the sun still rose in the East.

The rate of caregiver burnout is high among Glioblastoma caregivers. I’ve touched on this topic often, tried to explain how relationships are renegotiated and the difficulty in caring for someone who has vanished in so many of the ways that matter. For me, one of the greatest challenges I faced was when I found myself arguing with Matt about topics that seemed ludicrous and surreal— whether everyone knew it was New Years Eve, whether he could call Duke to order food, whether butcher knives could be dangerous—with the same energy that I once used to argue about politics and plot lines.

One year ago today, I saw Matt on the stairs and instead of finding a bit of patience and understanding, I panicked. We argued. Knowing now that we only had ten weeks left together, I wish I’d chosen patience over panic. But I also know, thanks to hindsight, that so many of these final seventy days were spent desperately trying to make it through the next minute and we did the best we could. Sometimes our best wasn’t perfect.

And I suspect that’s okay. Always.

November 24, 2017: Spark of Light

On November 24, 2017, almost exactly one month after beginning outpatient physical therapy at Kessler, Matt had his last day of both cognitive and physical therapy at Kessler. We didn’t put a pause on therapy because Matt wasn’t making progress—although that factored into our decision. Instead, we decided to halt therapy until after the new year for two reasons. One, because Matt was scheduled to start whole brain radiation in the coming days and we wouldn’t have time for both—Matt might not have the energy for both. And, two, we didn’t know what to expect in terms of side effects from whole brain radiation.

The potential list of side effects was extensive and terrifying. I noted the most concerning side effect—temporary or permanent short term memory loss—but there was also a very real chance Matt would experience fatigue, nausea, and that dreaded swelling. Swelling, which could cause confusion, weakness, motor skill impairments—all the symptoms we were hoping would be relieved upon treatment, not exacerbated by treatment.

November 24th, the day after Thanksgiving, was not a school day. Which meant I had to drag G and H with me to Kessler. They sat beside me in the waiting room during Matt’s two hours of therapy. In return for their good behavior, after we bid goodbye to the therapists, we (our family of four) took a trip to the Turtleback Zoo, which was just around the corner from Kessler.

I don’t remember a heartbeat of this visit to the zoo. I took about two dozen pictures of G and H, but flipping through the saved photos on my phone does nothing to spark a memory. I tried to examine G’s and H’s expressions to see evidence of the cruel transition they were undergoing. G and H look happy in the photos. Simply happy. And to be happy, to feel loved and safe, is all we (Matt and I) could have wanted for them.

When I look at the photos, I see also how inseparable they’d become.

A side effect of the cruel transition they were undergoing was that while Matt wasn’t Matt, and while I was busy attending to a Matt who wasn’t Matt, G and H grew close. They argued frequently. They still argue frequently. But in the moments that matter, they became the other’s fiercest protector, biggest fan, and loudest supporter.

During our first Thanksgiving without Matt, when G was hit by a grief wave, it was H who came over to tell me that she needed me. Yesterday, when H was on the verge of a temper tantrum in public, it was G who found a way to sing silly songs to distract him.

Early on, I promised to find a way to soften the sharpest edges of this story. I promised to pick out the moments of light and love and share those alongside all the darkest times. In today’s post, I can deliver on that promise. Because today’s post is not about Matt’s final therapy session or a barely memorable trip to the zoo, which was probably marked by stress and frustration (for both Matt and me.) Today’s post is the story of a glowing spark of light that was somehow crafted out of moments saturated by heartache and fear.

November 23, 2017: Thanksgiving Day

Thanks to text messages I know a few things about November 23, 2017. I know we went to my sister’s house for Thanksgiving dinner and tried to seem normal. I know there were so many of us that the kids’ playroom needed to be appropriated. I know Matt went to bed soon after the kids fell asleep and I sat awake, texting and watching re-runs of old sitcoms.

I don’t remember if Matt had fun or if he managed to find a little bit of that Matt humor to entertain the others at the table. I don’t remember if he read G and H a book before bed. I don’t remember if we exchanged gossip we’d collected at dinner and made plans for the future. I don’t remember, but I have a guess.

One year ago, on November 23, 2017, we celebrated our last Thanksgiving. Another last. Another last which should be memorable, if for no reason other than that it’s a national holiday. And yet, I have nothing to say about this last beyond what I’ve shared—no spectacular flash of memory, no razor edged story. Not even a hope inspiring anecdote to give meaning to this day.

I don’t know what that says about this last. Maybe we didn’t make it meaningful enough? I knew by November 23rd that (most likely) we didn’t have a lifetime ahead of us, but no part of me even considered that we might not even have a year. It didn’t occur to me that this might be our last Thanksgiving together, that I might want to stop the forward momentum of the day and tell Matt all the things I was grateful for.

This year, yesterday, we (G, H, and I) celebrated our first Thanksgiving without Matt. We once again went to my sister’s house. But this time, there were only a few of us and we didn’t need to spread into the kids’ playroom. This year, we didn’t leave early, despite the grief wave that hit G and H so hard they ended the night clinging to my legs. This year, our Thanksgiving dinner will be memorable for all it was missing.

As I write this post—and in light of the posts the last few days—I find myself wondering whether I wish we’d done everything differently. What if we’d listened—really listened—to what the doctors were telling us? What if I didn’t find reasons to disregard all the studies I’d read about leptomeningeal disease in GBM patients? What if we had acknowledged that November 23, 2017 could be a last Thanksgiving? If we’d faced reality rather than clung to hope, what would the day have looked like? Would it have been more memorable?

Maybe we would have slowed down. Maybe we would have sat and talked to each other and stopped trying to appear normal—I doubt we were fooling anyone, anyway. Maybe I would have told him I was so grateful for the years we’d been given, because they were the very best of my life.

Maybe. But maybe not. Because no matter how hard I try, I can’t imagine a reality in which either Matt or I would be able to accept that our situation was hopeless—we were both way too stubborn to admit defeat. We had way too much (possibly naively placed) hope. And I can’t regret that. That stubborn, naive hope reminds me that a spark of the real Matt and Elaine  remained, even then, even when it seemed we (the Matt and Elaine I knew) had all but vanished.

For this first Thanksgiving, which was marked by waves of grief and gratitude, I found myself grateful for a number of things. Not only family and friends, but also the hope that blazed through our story, the hope that kept us going forward and also kept us anchored to a version of ourselves that was disappearing too fast.

November 22, 2017: Thanksgiving Eve

On November 22, 2017, with Duke’s grim assessment of Matt’s future weighing over us, we (Matt, his parents, and I) headed over the George Washington Bridge to meet with Matt’s neuro-oncologist to discuss the lingering glimmer of hope that kept us from falling over the edge into hopelessness.

We left the house right after G and H boarded the school bus in an effort to beat the Thanksgiving Eve morning rush hour traffic. Our neuro-oncolgoist had squeezed us into her schedule, which meant she’d likely double or triple booked herself in order to get us onto the calendar. It was a kindness. And also meant that we couldn’t really complain when we had to wait more than an hour for our appointment.

When the doctor arrived, she sat down and clasped her hands together. She asked Matt a series of questions to test his cognition. The questions had changed from the ones he was asked months and months earlier. No longer was he asked to remember a grocery list. No more apple, penny, and table. Instead, she pointed to her nose, to her pen, and asked him to name the objects. He could. She asked him the date. He knew it. She asked him how much money she’d have if she had five quarters. He asked for a piece of scrap paper—a habit he’d gotten into with his cognition homework—but couldn’t answer her question.

We talked about the MRI. The doctor showed Matt’s parents the images Matt and I had seen the week before. The images were no easier to view and the doctor’s voice softened as she pointed out all the places to which the tumor had spread. That endless report.

Afterward, she looked me in the eye and told us that a cure was off the table, that we were at a point in Matt’s treatment where we needed to decide how hard we wanted to fight. Her words echoed Duke’s from the day before with one critical distinction. She didn’t give us a timeline. Refused to give us a timeline, actually. Because radiation had worked so well once before, because Matt, despite all his cognitive deficits, still defied her expectations. Because his case was not like any other she’d seen. Which meant, in my mind, that though a cure was off the table, hope wasn’t.

The doctor asked Matt if there was a tipping point, a point at which his quality of life became more important than fighting back the tumor. He answered in the exact way I expected, the exact way he’d always answered. He said he wanted to do whatever he could for as long as he could to fight. He said he wasn’t done.

And some selfish part of me had hoped for that answer. Because I knew how to fight alongside Matt, but I didn’t know how to stop fighting alongside Matt. The idea of doing nothing was the most frightening suggestion I’d heard put forth since Matt was diagnosed. Doing nothing was too hard.

After the appointment, the radiation oncologist made time to meet with us. He told us Matt would need fifteen rounds of radiation—five days a week for three weeks. Which meant we’d be driving into the city every day during the heart of gridlock season. I could expect no shortage of stress, traffic, and delays. The radiation oncologist went on to explain the side effects—dry mouth, headache, hair loss, and a 50% chance that Matt would lose his short term memory, either temporarily or permanently. But he also agreed with the neuro-oncologists. Whole brain radiation could work. Whole brain radiation could not only slow the growth of the tumor, but maybe, possibly, hopefully reduce the tumor.

Whole brain radiation—the stress and side effects—could all be worth it.

No decision we made was easy. The odds had been against us since the beginning. But like I said so long ago, we always chose the road that offered the most hope. Every time.

On November 22, 2017, our hope for a cure was gone—although, to be very honest, a not-so-small part of me couldn’t stop hoping that poliovirus would make an eleventh hour appearance to cure Matt—but a different hope remained: the hope that Matt could come back to himself, that we’d get more time together. That hope remained as glowing and warm and reachable as ever.

November 21, 2017: Keep Going

On November 21, 2017, I was engaged in an all too familiar activity—clutching my phone in my hand and willing a 919-number from North Carolina to flash on my screen. The previous day, Columbia’s radiologist had finally finalized his report and we’d overnighted a copy of the CD to Duke. That morning, UPS alerted me to the fact that the shipment had arrived. Now, the ball was in Duke’s court.

Duke hadn’t played a large role in Matt’s care since the shunt surgery. Daily conversations were replaced by long weeks of silence. When I had concerns or new symptoms to share, I called Columbia, not Duke. When the eye doctor determined that Matt needed a MRI ASAP, I didn’t even think to alert Duke. We—maybe just I—felt betrayed by them. Because they’d missed the hydrocephalus diagnosis. Because they’d listened to my worried calls and read my frantic emails, but failed to hear what I was saying. And because they’d abandoned us. Over these last weeks, they’d been absent, had accepted that I suddenly stopped calling and didn’t once wonder why.

Maybe it’s not fair to expect them to keep track of every patient when there are only so many hours for so many patients, but I had thought maybe we were different because we were poliovirus patients and poliovirus was different. Poliovirus wasn’t just a clinical trial, wasn’t just another treatment. My logic can be explained like this: we weren’t particularly special, but poliovirus was.

The question becomes, why after all these weeks did I turn again to Duke? Why send them the MRI after all these weeks of radio silence? Because despite it all, I still believed the saying: At Duke there is hope. Some huge part of me still believed that poliovirus could be our miracle, if we could just overcome all these obstacles. I had sent Duke the MRI out of some desperate belief that Duke might have a trick up their sleeve, a solution that could fix everything.

I sent Duke the MRI and waited for their call because a year earlier, on November 21, 2016, we met with the Duke doctors face-to-face. Not for treatment. Not for an exam. Just to meet. To be on their radar. To open a patient file with them. Because we wanted to be Duke patients. Because at Duke there is hope. At Duke people had been cured and if we needed a miracle, we’d find it at Duke. Two years ago today, we sat at a table with the Duke doctor and she told us Matt would see his kids graduate high school. Two years ago, I turned my back on every doctor, radiologist, person who tried to extinguish the hope that Duke had lit.

On November 21, 2017, the Duke doctor called me while I sat outside one of G’s after school activities. I stepped away and took the call. She confirmed what Columbia had said—leptomeningeal disease. She told me whole brain radiation was an option. She suggested a few chemotherapies that we could potentially try to prolong life. But she told me that none of those options would cure Matt, none would give him more than a few months at best.

Exactly one year after igniting hope, she extinguished it.

I thanked her for her time, hung up, and stared into a hopeless future trying to understand how we’d ended up in this nightmare in just one year. For a few bleak moments, I knew what it felt like to be hopeless.

I sat back down beside a friend who was also waiting for her daughter. She asked if I was okay and I shook my head. No, I’m not okay. Not at all. I don’t know if I told her what Duke had said or if she just knew by my expression. I said I told her I didn’t know what to do next.

She said you keep going. (Not lucky medically, but so lucky to be surrounded by the friends and family who surrounded us.)

But I couldn’t keep going. I couldn’t keep going without hope lighting the way. I didn’t know how. I wasn’t brave enough to face a grim reality. But I also knew my friend was right—we had to keep going.

So I decided in that moment to turn my back on Duke, like I had turned my back on so many others. So what if Duke lost hope? Columbia hadn’t. Columbia had offered a glimmer of hope. A desperate, maybe impossible glimmer, but a glimmer nonetheless.

And we could keep going with nothing but a glimmer. We’d done it before.