November 20, 2017: Seventy-Five Days

One year ago today, Matt returned to therapy—his first time in a week. While Matt went to physical therapy, the cognitive therapist pulled me aside. He said he’d completed an assessment on Matt and noted that Matt had not made any progress, that, in fact, he’d taken a step backward. The therapist didn’t know all that we’d learned in Matt’s most recent MRI and I didn’t share it. Not yet. I listened as the therapist told me that Matt would be ineligible for treatment if they didn’t see forward progress by the next assessment. If they couldn’t help him, they wanted to give the time slot to another patient who could be helped.

It made sense, but that didn’t make it any easier to hear.

Two years earlier, on November 20, 2016, Matt and I flew to North Carolina—our first trip to Duke. We arrived in the late afternoon, checked into the hotel that would become too familiar, took a shuttle downtown, and went to a tapas restaurant. I don’t have the text messages from this night, but I remember it as one of our most fun nights. We didn’t feel like we were in North Carolina because we had an early morning appointment to meet with doctors to discuss a dangerous, lethal cancer. We felt like we were any other couple, out to dinner without the kids. (Actually, I remember being surrounded by college kids and telling myself we were indistinguishable from them, just a couple of college kids out to dinner. Ever hopeful. Ever delusional.)

Two years ago today, over a pitcher of sangria, we were giddy with hope. One year ago today, we were staggering down a road toward a distant glimmering hope.

On November 20, 2017, we had seventy-five days left. My memory of these next seventy-five days is unreliable at best, completely non-existent at worst. When I sat to write today’s post, I read the text messages I exchanged with a friend, and then continued reading through November and December—I couldn’t yet face January. As I read, I felt as if I was reading someone else’s story. Or, more accurately, someone else’s nightmare.

There were so many defining moments, so many life-changing-world-tilting-off-its-axis minutes, and I don’t have a clear memory. And I can’t help but wonder how it’s possible to remember the exact color of the sky the night Duke first returned our call in June 2016, but struggle to cobble together memories of our last Thanksgiving together.

Another question, along with all these questions posed yesterday, that may never have an answer.

Specific day-to-day events are gone from my memory, but I remember the feel of these last seventy-five days. Those first few moments every morning before reality crashed back in. The way the effort of trying to keep a family of four from falling apart sometimes felt too heavy, too lonely. That feeling of wanting to just go home, knowing that the home to which I wanted to return had vanished, because sometimes home is a person, not a place.

The next seventy-five days are difficult to read, tragic and unforgiving. The next seventy-five days tested us and broke us. But the next seventy-five days also define our story more than any of our other days. We fought against that not-so-invisible monster even when it was too hard, we pressed forward even when we fell further from our miracle, we found a reason to hope even when it seemed hopeless. We wrote a story worth telling in those seventy-five days. Tragic and unforgiving, and bursting with hope.

November 19, 2017: The Avastin Theory

One year ago today, we (our family of four) celebrated H’s birthday by gathering a few dozen six-year-olds together in an arcade to shoot foam balls at each other, eat pizza, and gobble down cake.

We took our last family photo, posed over an ice cream cake and flickering birthday candles. Matt couldn’t quite lean into the photo. His smile wasn’t exactly the one I knew from more than a decade together. But he was there, smiling and taking photos, talking to guests and beaming with pride. All the things that he’d struggled to do in other moments.

I’ve written before about how the line shifts. Behavior that once would have set off alarm bells, now simply didn’t. The cruelty of brain cancer is the way the abnormal becomes normal.

There was a moment during H’s birthday party when a family member learned the truth of Matt’s MRI and asked me about it. Five weeks earlier, there’d been one tumor. How could it be that the tumor had spread so drastically, so devastatingly?

I remember not knowing how to answer. We had an appointment to speak with our Columbia doctor and we hadn’t heard from Duke; all I had was what I’d Googled, what I’d read, and what I’d learned from the brain cancer forums. All I had was another theory. About Avastin.

Matt started Avastin in May to control the sudden and severe swelling caused by the poliovirus. Back in May, when we asked Hackensack (our then local neuro-oncologist) to administer Avastin based on Duke’s orders, Hackensack refused. The neuro-oncologist said Avastin was a dangerous road for a number of reasons, most relevantly for this post, because it makes MRIs look better, though nothing is actually better. We parted ways with Hackensack over Avastin.

Since about August, Matt had been getting steadily worse—physically, mentally, emotionally—though his MRIs were looking better (or at least stable). We couldn’t understand the disconnect, but we trusted the results.

My theory: maybe the disconnect was Avastin. Maybe Avastin made every MRI between May 1st and November 15th unreliable. Maybe the tumor had been growing and spreading for months and weeks and we couldn’t see all those little nodules, those spaces filling with tumor because Avastin had pulled a curtain over all of it.

There’s a study floating around the brain cancer forums that suggests tumors come “galloping back” after Avastin is discontinued. When I once asked the doctor about that study, the doctor assured me it had been disproven.

And yet, Matt’s cancer returned with a vengeance just two months after Avastin was discontinued and we were left asking how.

How? How could it be that the tumor had spread so drastically, so devastatingly, in just five weeks? How could Matt’s tumor have lashed out in a way that was supposed to be nearly impossible? How did the poliovirus fail him so miserably when it had cured others?

One day, if G and H pose these questions, how will I answer?

Honestly, I don’t know. I have my theory, but I spent twenty months crafting theories to explain the unexplainable and none proved correct.

I know I could spend a lifetime searching for an answer because that’s easier than telling G and H that sometimes terrible things happen and there’s no explanation, no villain to blame.

This weekend, H turned seven and G ran her first 5K (ran, walked, complained loudly). As the weekend drew to a close, G posed a different question. She asked me whether Daddy would be proud of her and happy for H. The question broke my heart. Because of course he’d be proud, of course he’d be happy, and I wish she didn’t have to wonder.

Despite my best intentions and best efforts, this blog will not help me answer every question for G and H. How and why will mostly remain a mystery. But I hope this project will definitively answer one question for them: would he be proud? Without a doubt. Every moment of every day. Of their strength and resilience and ability to keep moving forward, even when moving forward feels too hard.

November 18, 2017: Take A Minute

One day after being introduced to the word leptomeningeal, one day after posting a desperate message on the brain tumor forums because I couldn’t make sense of the articles I’d Googled which noted survival times in weeks and months, Matt and I went to a bat mitzvah.

I remember the day, weeks earlier, when Matt had called one of his oldest friends and RSVP’d to the bat mitzvah. Our RSVP was weeks too late. (At my best, I’m often too scatterbrained to remember to RSVP on time. And I was nowhere near my best.) Matt’s friend graciously accepted our late RSVP and Matt was looking forward to going.

But after the news the doctor had delivered, I wasn’t sure Matt would want to go. He did. He wanted to see these friends that were like family, to celebrate their daughter, who he’d known since she was a baby. So we went.

I remember the long drive down the Garden State Parkway. I remember the rain coming down in sheets and how impossible it was to see the lines on the road. I remember gripping the steering wheel and trying to crack a joke about getting older and my poor night vision. (Every good joke has a little truth, right?)

I remember taking the exit off the Garden State Parkway and the moment the rain let up so I could release my white knuckled grip on the steering wheel. I remember talking with Matt about something irrelevant when he suddenly stopped talking. I glanced over at him and saw the words he wanted to say stuck in his throat, the panic in his eyes as he suddenly couldn’t speak.

Matt was panicking, so I couldn’t. I told him to breathe. I said we should both take a minute and breathe together, and if that doesn’t help, we’ll drive straight to the nearest hospital. I told him it was all going to be okay—we just needed a minute. He nodded and we drove in silence.

And after a breathe, after our moment of silence together, Matt’s words returned. The panic in his expression vanished. I asked if he still wanted to go. Without hesitation, he answered. He wanted to go.

We arrived—late—and ran (walked as fast as Matt’s physical abilities would allow) across the parking lot through the pouring rain. In the entry way, I took off my heels and spilled out the rain water that had collected there. We were thoroughly soaked, thoroughly stressed. But we’d made it.

Matt spotted a few of his high school friends and we went over to say hi. Matt was as good as I’d seen him in weeks, happy and animated and engaged—and within moments, the friend we were speaking with shot me a troubled look. Matt was happy and animated and engaged, but the sentences he was stringing together didn’t quite fit, his answers to questions didn’t quite make sense.

Matt hadn’t told anyone about his most recent appointment, the devastating truth of his MRI. And this bat mitzvah was not the time to share that information. So I didn’t.

When the eye doctor told Matt something was blocking his vision, when Columbia told us (in not so many words) that the MRI was complicated and Matt didn’t have the luxury of missing a birthday, when we learned how thoroughly the tumor had exploded, when I’d Googled the word leptomeningeal—I hadn’t given in to the looming breakdown. Not once in all those instances. I’d swallowed the rising tide of tears and emotions and kept moving forward. I’d had no choice. We’d had no choice.

But suddenly, I couldn’t. The weight of all that information slammed into me.

I said once before that I only delved into the depths of “what if” three times. Once on the way home from a sleepaway camp visit, once during the season finale of Game of Thrones, and once in November. On November 18th, I couldn’t push back the breakdown and through gasping sobs in a secluded corner, I asked myself, “what if.” What if Matt isn’t here for G’s bat mitzvah, for H’s bar mitzvah?

I hated that the question found any kind of purchase in my mind. I told myself to take a minute, scale back the drama, and go enjoy the night. With Matt. Because though he wasn’t himself, he was having a great night. He spoke with old friends, reconnected with people from his childhood, and didn’t let a vicious disease stop him. What I remember most from November 18, 2017 is Matt’s smile, his energy.

I wasn’t in denial. I’d read the articles and studies and statistics. I knew the truth the doctor didn’t say in so many words. I knew our happily ever after had moved even further from reach. The chance of a miracle had grown even smaller. But that chance hadn’t disappeared. And how could I—how could we—give up hope when hope still glinted in the distance? Radiation had worked a miracle before, it was reasonable to believe it could work again.

On November 18th, with reality pressing on our heels, we chose to take a minute to find the strength to keep hoping and reaching for that ever elusive miracle.

November 17, 2017: Third Act

I’ve often compared this story to a novel. I’ve noted the first plot point and the midpoint. The story is now heading into the third act, which is preceded by the second plot point, the moment in the story when the last tidbit of information is exposed, when the protagonist is put on a straight road toward the villain.

One year ago today, Matt and I drove over the George Washington Bridge and headed to Columbia to meet with a doctor who was filling in for our usual neuro-oncologist to hear results nobody had wanted to share with us.

We didn’t wait long. The doctor arrived, opened the MRI results, and started speaking while pointing to places on Matt’s brain that showed tumor. And she didn’t stop speaking. Long after my own brain had stopped processing, stopped understanding what I was being shown. It took hours until the truth of what the doctor had said sunk in.

This post is difficult to write. I don’t know how to make this next part easier to read. My thoughts are still, apparently, largely jumbled. I stopped and started and deleted about a hundred sentences. The problem is that I don’t know where to start, how to share what the doctor told us and explain all the thoughts that collided at once. I debated skipping the details—maybe it doesn’t matter what the MRI showed. But, that didn’t feel right. To understand Matt’s strength, our hope, it’s important to understand exactly what we faced.

So, for today, I’ll stick to the facts and I’ll let the rest of the story–all the thoughts, feelings, theories–unfold in the ensuing days

On November 17th, I wrote this (blunt) text message to a friend who’d asked about the appointment:

The cancer has exploded. The tumor that had been infused with the poliovirus has grown—unchecked, apparently. And separate from that tumor, there are cancer cells throughout his brain: in the wrinkles, forming little nodules in more places than I could keep track, on some pituitary thing that’s blocking his vision, in the dorma—or whatever the lining is called between skull and brain. Basically, it’s widespread in the cerebral spinal fluid. The doctor said it’s something called leptomeningeal disease—a very rare condition in a GBM patient.

Rare, because GBM doesn’t spread. That’s what we’d been told. That was the premise under which we’d operated for more than a year.

 We left the appointment stunned, terrified, and trapped in a world that seemed impossibly dark. Impossibly dark, but not hopeless. Before we left, the doctor offered us an option: whole brain radiation. It sounded terrifying. It was certainly a long shot. But the doctor believed it could be worth the effort. Because Matt had responded well to radiation twice—the first time in the summer of 2016, and the second time in September 2017, when Gamma Knife radiation (stereotactic radiosurgery) had made one of his tumors vanish within weeks. A tumor had vanished once before and maybe…

It was a chance, a glimmer of hope in a moment overcome by darkness.

It was that glimmer of hope that lit our way forward.

November 16, 2017: H’s Birthday

A picture dwells in my phone’s memory for every November 16th since 2011, the day H was born. I remember walking into the hospital with Matt, checking in with the nurse in the labor and delivery ward, cracking a joke. I remember seeing H for the first time, hearing him cry, and taking a photo—all the things we’d been denied with G’s dramatic birth. I remember the thrill of being a forgettable patient.

Six years later, I suspect we (Matt and I) were not forgettable patients. I also suspect we were among the most annoying patients the Columbia ER doctors faced that night. The long day had bled into a long night. Our quick trip to the local hospital had transformed into an endless night in Washington Heights. Matt and I were exhausted. We wanted to get home. We wanted answers.

Back in April, I wrote about doctors who went above and beyond and doctors who were forced—due to the sheer number of patients in the waiting room—to move on from us immediately after we left their rooms. I wrote about doctors for whom I retained  a reserve of choice words and doctors who likely had a similar reserve of choice words for me–and I singled out a random Columbia ER doctor.

At some point after midnight, Matt and I learned that the preliminary MRI results were available. The random Columbia ER doctor who’d been assigned to Matt told us that the results were complicated; they did see something concerning, possibly a new tumor, possibly another issue completely. The random Columbia ER doctor told us he couldn’t say anymore without the final report. He told us someone from neurology would come down and speak with us. Hours later, no one had come. No one had told us anything.

I stalked and annoyed and badgered the random Columbia ER doctor. I pestered him. I said some things that, in retrospect, are wildly embarrassing. But in the heat of the moment, after 18 hours of hospitals and doctors and non-answers, I had nothing left. No filter. No patience. No soft edges. Words and actions driven by desperation, not kindness. Not an excuse. But an explanation.

Eventually, someone from the neurology department arrived. The resident who’d come to speak with us told us that the radiologist had not yet finalized his report. We (I) understood by the resident’s tone that this was not an efficiency issue, but a complicated result issue. The resident said she’d heard that we had a birthday to get home for, and though they’d like to admit Matt for observation, we could sign ourselves out AMA (against medical advice) if we promised to return after the birthday.

The subtext of her advice was impossibly sad to hear. I remember the way her eyes softened as she looked at Matt and told us that he should be home for H’s birthday. I remember choosing not to delve too far into the “what if” question her soft expression posed, the reality her words edged us toward.

Once we arrived back home, Matt went straight up to bed. I decorated the house for H’s birthday. Ninety minutes later, H was up. I remember the way he clung to me as I walked into his room, the way he marveled at the decorations, and told me he had been afraid that we’d miss his birthday, that I’d forget to decorate. I felt my heart breaking as I swore to him that we couldn’t possibly forget his birthday—it was one of our favorite memories. I didn’t know how to tell him we’d just spent twenty hours fighting to get home to him.

That afternoon, a doctor from Columbia called us. She would not give me the results of the MRI over the phone—she said we would have to come in, but we didn’t need to plan on a hospital admission. In retrospect, that was a clue—a second clue, maybe—that whatever this MRI showed would change everything.

The day wasn’t easy. We’d left Columbia AMA so that Matt could spend time with H on his birthday, but that cruel transition—Matt wasn’t Matt. He napped and sat quietly on the couch and couldn’t engage. H played with his birthday presents and mostly avoided Matt.

When I tried to discuss our night, Matt said he had no memory of being in the emergency room and leaving AMA. More than any other moment, that admission—that he didn’t remember the hours in the waiting room, the final conversation with the doctor—made me realize that Matt and I weren’t equal partners in this fight, anymore. That, at least for now, Matt couldn’t fight the invisible monster that had invaded our lives. That, at least for now, I was fighting that invisible monster for him on my own. And that was terrifying. How was I supposed to do any of it on my own? It’s an echo of a question I find myself asking frequently in Post Hope.

That night, we went out for hibachi—a birthday tradition. I don’t remember this dinner, but I wrote to a friend and told her that after a full day’s rest, plus the Dex Matt had re-started on doctor’s orders, he managed to be more involved in the dinner.

G celebrated her birthday in March, about a month after Post Hope began. Since then, she’s been warning us (H and me) that birthdays without Daddy are terrible. (Yes, she’s inherited a hint of my tendency toward drama.) I don’t know what to expect for H. I don’t know if the day will hurt, if he’ll remember that he didn’t quite have his dad last year at this time, if he’ll hide his feelings behind cake and wrapping paper, or if he’s used to that cloud of grief lining the happy moments.

In Post Hope, I have only this hope for the day: that he remembers, always, that we (Matt and I) did everything—from beginning to end—for him and G, so we could be there for every birthday. It’s all we wanted. It’s all that ever mattered.

November 15, 2017: Our First Rainbow

On November 15, 2016, I saw our first rainbow—the rainbow that appears in the background image of this blog.

I took the picture and posted it on Facebook from the waiting room of a doctor’s office. We were awaiting the results of Matt’s “first” MRI—and I’m using the word first loosely here. He’d had MRIs done in the hospital—pre– and post- brain surgery. He’d had an extra MRI done for Duke. He’d had a MRI before he ever started radiation and after the six week block of radiation. But this was the first MRI following nothing but two cycles of Temodar. This was the first MRI after he’d spent two months away from doctors and offices and MRI machines. This was the first MRI in which he’d gone two full months without monitoring and a shimmer of worry traced every  moment while we sat in the waiting room.

The MRI was clear. The doctor walked in with a smile and told us all was looking good, exactly as expected. Matt went to work. I went to get G and H. And we continued with our lives, blissfully unaware that one year later, we’d be scrambling to get a MRI, all would not look good, and nothing would be as expected. There’d be no rainbow.

On November 15, 2017, I put G and H onto the school bus, told them I’d see them in the afternoon, and hurried Matt to the local hospital to ask for a MRI based on the eye doctor’s findings. The local hospital informed us that they didn’t do MRIs in the emergency room. They offered a CAT scan, which theoretically would show whether anything needed to be urgently addressed. By 10:46, the CAT scan results were back. Nothing alarming. The tumor maybe, possibly looked slightly smaller. Great! Although, why the blindness? Why the cognitive changes? We were still plagued by unknowns. The local hospital consulted with Columbia, who wanted Matt to be admitted overnight for observation and a proper MRI, just to be safe.

The prospect of an overnight in the hospital for observation was distressing. The prospect of an overnight in the hospital when the next day was our son’s birthday was simply unacceptable. We couldn’t miss H’s birthday.

At 12:45—four hours after arrival—the ER doctor—the same one who’d stitched Matt up after he fell—arrived and told us they wanted to transfer Matt to Columbia. The shunt for his hydrocephalus needed to be recalibrated after a MRI (something about magnets) and the local hospital didn’t have the means to do the recalibration. (Recalibration turned out to be a constant source of frustration over the next few months.)

We decided not to wait for the local hospital’s transfer, which would require more paperwork and waiting. Sensing that we were in for a long afternoon, I recruited family and friends to help with G and H after school, and then drove over the GW Bridge to Columbia’s emergency room—the place we’d brilliantly planned to avoid.

By 3 p.m., we were in a bed in the emergency room waiting for a MRI.

At 5 p.m., we were still waiting for the MRI.

At 8:16 p.m., we were still waiting for the MRI. And patience, mine and Matt’s, went out the window.

At 10 p.m., he was taken into the MRI. While in the MRI, the ER doctor suggested to me that Matt may need to be kept overnight. His vision tests were worse than expected. There was a fear of permanent blindness or a new tumor in brain lining. I remember telling the doctor that we had a five—almost six—year old son at home who wanted to wake up to his parents on his birthday.

At midnight, we were still in the emergency room. We’d been shuffled from room to room. Matt had been stuck with needles, examined under lights, and questioned endlessly. We were exhausted, impatient, and desperate to get home in time for a birthday.

A friend texted to ask how I was holding up. I said, “Nothing to worry about yet.” Denial or delirium or blind hope? One year later, I don’t know. I just knew we didn’t have the luxury of falling apart.

IMG_2034

November 14, 2017: Not Double Vision

On November 14, 2017, Matt returned to the original eye doctor who put him on the road to prism lenses.

The night before, Matt had told me he was having trouble seeing, but he couldn’t find the words to describe the difficulty he was having. The obvious assumption was that the double vision had returned, but Matt insisted that his prism lenses weren’t correcting the problem.

I’d already spoken to Columbia and I’d already moved his MRI as far forward as their schedule would allow, so we went to the next most logical place to help Matt find relief for his latest symptom. The eye doctor. Matt’s mother drove Matt to the eye doctor for a 2:45 appointment.

And then another bottom dropped out.

The eye doctor confirmed that the prism lenses would not help Matt. He was not experiencing double vision. Upon examination, the eye doctor concluded that Matt couldn’t see because he was blind in his right eye. Something was completely obstructing his vision. The eye doctor suggested that Matt have a MRI ASAP. Next week was too many days and hours and minutes away.

I remember turning to Google. I remember reading an article about brain tumors on the optic nerve and what that meant. I remember the panicky feeling, like a thousand pinpricks hitting my skin all at once. I remember telling myself not to jump to conclusions. I had no reason to panic yet.

I called Columbia and the doctor offered a handful of theories to explain the blindness—all of which seemed surmountable, and none of which I can remember now. As is so often the case in this story, cute theories to make sense of impossible scenarios don’t prove true. The doctor agreed that the MRI should occur earlier than next week. But—

I said once before that Columbia—as esteemed an institution as it is—is still a city hospital. Prone to city delays and city overcrowding. I called and explained the eye doctor’s findings, requested a MRI ASAP. They couldn’t squeeze us into the schedule. The eye doctor, hoping to stress the urgency and gravity of what she saw when she looked into Matt’s eyes, reached out to Columbia on Matt’s behalf. Doctor to doctor. Even after that conversation, Columbia could not fit Matt onto the MRI schedule. The only option Columbia could offer us was to go to the emergency room and have a MRI done there. But that meant hours of waiting. That meant recruiting help with G and H. That meant exposing Matt to viruses and infections.

Flu season kicked off hard and fast in the Fall of 2017. By November 14th, flu season was well underway, particularly in the city. We wanted to avoid the Columbia University emergency room at all costs. So we concocted—what we believed to be—a brilliant plan. We’d go to the local hospital’s emergency room first thing in the morning. We’d get a MRI from the local hospital—it wouldn’t take more than an hour or so—and drive the CD full of images to Columbia ourselves. With this plan, Matt might even make it to therapy on time.

But, we all know what they say about the best laid plans…though that’s a story for tomorrow.

One year ago today, I grasped onto the theories the Columbia doctor offered. Those now forgotten theories were the glimmers of hope that I clung to while the invisible monster nipped at our heels.

November 13, 2017: Family Yoga

On November 13, 2017, one day after the BT5K sponsored by the American Brain Tumor Association in support of brain tumor awareness, after a morning questioning whether the warning bells pealing in my mind were based on nothing but my overdramatic tendencies, I called Columbia.

While Matt was in physical therapy, I explained to a nurse all that I’d noticed. The posture. The way he moved somewhat stiffly. The long trips to the bathroom. The cognitive decline—memory lapses, word finding difficulties, logic troubles. The personality shift. I told her that Matt insisted he felt fine. I told her that I didn’t know anymore whether I was seeing what I thought I was seeing or whether I was imagining all of it. I think I admitted that I’d rather be the crazy wife than the wife that missed something important. If that other shoe was going to drop, I was determined to catch it.

The nurse relayed my message to the doctor who called me back in the afternoon. The doctor said it would be wise to move Matt’s MRI ahead, which was scheduled for November 29th. Unfortunately, the MRI machines were completely overbooked. She told me she’d fit Matt in either Monday or Wednesday of the next week, and someone would call me to confirm an appointment later in the week. It was the best she could do.

On our way home, I asked Matt about therapy. He strung together words and sentences and I couldn’t make sense of what he was telling me. I can’t remember if I pressed him for a more rational story or if I nodded and accepted what he said. Sometimes I pushed him to be himself—and found myself disappointed. Sometimes I didn’t—and found myself broken hearted. And there was no pattern to explain my choice.

Along with Matt’s cognitive therapy homework, Matt was also assigned a number of physical therapy exercises to do at home. He often—even before Glioblastoma—struggled to motivate himself to exercise and stretch. In our decade plus together, he’d often lament his lack of flexibility and expressed a desire to be more fit. Usually that meant more tennis. Sometimes that meant he’d use a treadmill, but, he’d inevitably get tired of running in place after a week or so. Sometimes he’d use the elliptical, but then he’d forget to make time for it. Sometimes, he recruited me to help.

When Matt was first assigned the physical therapy exercises all those weeks ago, he instituted family yoga night—G’s and H’s favorite night of the week—wherein Matt, G, and H were the students and I played the role of yoga teacher. I ran them through Matt’s exercises and added a few basic stretches. Inevitably, G and H would collapse in a fit of giggles and Matt would laugh at how quickly he worked up a sweat.

One year ago today, we—our family of four—held our last family yoga night. It was a short-lived session. Matt couldn’t. He wasn’t Matt.

That night, after G and H went to bed, Matt and I sat on the couch to watch T.V., as we had almost every night since G started sleeping through the night. Matt told me he couldn’t see, but because of his word finding, logic, and cognitive processing difficulties, he couldn’t explain what exactly was wrong with his vision—double vision again or something else? He said his glasses didn’t help.

Panic ate away at the rest of the night. The other shoe was about to drop.

November 12, 2017: BT5K

One year ago today, Matt, G, H, and I—along with a large group of family and family friends—participated in the American Brain Tumor Association’s BT5K. For the second year in a row, we woke up to a cold, sunny morning, drove into Manhattan, and walked along the Hudson River to help raise funds for research and awareness for brain tumors, including Glioblastoma.

I remember the day. I remember we were running late because Matt kept forgetting he needed to get dressed, because he didn’t want to be rushed out of bed, because he needed to go back inside for one more thing. I remember that he walked slowly and there was something in his posture that didn’t seem right. I remember family and friends coming up to me and commenting on how good Matt seemed and how I was internally screaming and wishing I saw what they saw. Because all I saw was a reason to call the doctor in the morning.

Afterward, we—the big group of family—went to brunch. Matt sat at the end of the table, mostly quiet. At one point, he put his head down on the table. Once we got home, he spent the majority of the afternoon and evening napping or resting on the couch, disengaged from G and H.

Two years ago, full of hope and a certainty that we had some secret weapon against a tumor with abysmal survival rates—Matt’s strength of character, our will power, all our supplements—we attended the BT5K. We walked and smiled and took photos by our team sign.

Yesterday, G, H, and I participated in the ABTA’s BT5K for the first time without Matt. For the third year in a row, we woke up to a cold, sunny morning and drove into Manhattan to walk along the Hudson River beside family and family friends. This year, I fought back tears for most of the drive into the city. This year, I was almost resentful about going. And I tried to examine why that was. My initial reaction was that I was annoyed by the t-shirts and water bottles and giveaways—the money for those things should go to research and desperately needed caregiver support. But the more I sat with that anger and resentment, the more I realized it wasn’t just the t-shirts and water bottles. It was this. We (Matt and I) gave not only our time, money, and support to brain cancer research, but also my husband, my children’s father, my hope, my dreams, my future, and my every moment of uncomplicated happiness. Matt participated in two clinical trials—and presumably his information is adding to the wealth of knowledge paving the way to a cure—and they (that ambiguous they) squandered all that we gave. He wasn’t cured. Both clinical trials failed him miserably. And, rationally or not (I realize not), for that reason, I’m as angry at the ABTA as I am at the doctors who didn’t save him. We gave everything to brain cancer research, and we have nothing but a t-shirt to show for it. And the thought of giving more, of walking in Matt’s memory rather than with Matt, reopened wounds I thought had started to heal. It was too hard. I was too angry. I knew that was selfish—so many people still need a cure—but it was true. (I promised this story honesty, not perfection.)

But then we arrived at the walk. And a few good friends surprised us by showing up. And we walked and chatted in the cold. And I thought of Matt walking that first year. I thought of how enthusiastic he was on the drive home—making me post pictures on Facebook and double checking that I’d tagged everyone in the thank you photo. How upbeat he felt after seeing all those people walking—family, friends, strangers—all because they believed a cure was within reach.

And I thought, maybe this year I can’t give any more—the anger is so visceral, it’s nearly blinding. But I can be there and that in itself can maybe be enough for now. To give hope to someone else who is walking for the first time, who needs to feel like there’s a world of people out there fighting for a cure beside him. To a caregiver, who maybe feels like she’s drowning under the weight of a new normal and a new role and needs to know she’s not the only one.

I believe it’s okay to be angry, to let that feeling be as true and present as all the others. One day, I hope I won’t be and I’ll be able to give more of myself. Because I also still do believe in the ABTA and Columbia and Duke and all those doctors and nurses and researchers. (Like I said: every moment in brain cancer is met with a contradictory moment.) One day, there will be a cure.

Of that, I am sure.

And for that, I will continue to show up, and give as much of myself as I can.

November 11, 2017: Kinda Concerning Actually

One year ago today, a friend asked how Matt was feeling and I wrote that he was “kinda concerning actually.” When my mom texted to ask how Matt was feeling, I wrote to her that he was very disoriented and struggling to make any kind of logical conversation. I didn’t go into detail, which means that I don’t have details to share.

I can guess. I can guess that he had trouble finding the word he wanted to say. That he struggled to answer questions. That our conversations looped in irrational circles and we both grew frustrated trying to communicate. That he asked G to turn off the television and then was upset with her when she did—because what he’d meant to say was something else entirely.

I can guess all of this because it’s what our lives began to look like. Every day. Every moment, every word, every look was impacted by brain cancer.

November 11, 2017 was a Saturday, which meant our usual doctor—at Columbia, because in my mind we’d all but officially transferred care from Duke—wasn’t in the office. I debated whether to call anyway. I considered what the doctor would do or suggest—move up the MRI or prescribe more steroids, which Matt despised. Neither option would give us (our family of four) the help we needed.

The cruelty of brain cancer: every moment was charged and desperate, and sometimes–much of the time–the doctors couldn’t help.

I decided to wait, to swallow the panic and let Matt rest. I believed maybe the cognitive decline I was witnessing was a side effect of a busy two days in Hershey Park. I remember vividly the stab of guilt associated with that thought. Maybe Hershey Park had been a mistake. Maybe he’d done too much and I’d not only let him, but encouraged him.

A year before that, on November 11, 2016 we (our family of four) were in the Dominican Republic on vacation. Matt was Matt, with a few slight tweaks. He drank less. He ate a little healthier. He tried not to miss a moment with G and H. We were days away from his first MRI after two rounds of chemo (aside from the initial six week treatment that is part of the standard of care). On the beach, Matt spotted an option for parasailing and looked at G, who has an intense fear of heights, and said let’s go. And G, who was—and is—a Daddy’s girl, said okay. We signed the waivers, Matt helped her into her life vest, and I watched as Matt and G sailed away with a boat full of future para-sailors.

The story I heard afterward from Matt was that G was the youngest person on that boat, that she panicked when it was her turn and refused to go. That Matt, plus a little peer pressure, somehow convinced her. That she loved it and everyone clapped for her when she finished.

To this day, G remembers how Matt snapped at her for doing what he’d asked her to do last year. It’s as clear a memory as the moment a boat full of strangers clapped for her.

One year later, I still find myself stunned by the speed with which brain cancer invaded our lives, shattered our normal, and left us scrambling to pick up the pieces.

parasailing.jpg