July 31, 2017: Twenty-First Century Marriage

One year ago today, Matt was away on his corporate retreat. We didn’t text very much, and when we did exchange messages, they were quick updates about our days. Instead of texting, Matt called me. Phone calls were highly unusual for us, reserved solely for emergencies and Matt’s work trips. Whenever Matt was away for work, I could expect a call from him when he woke up, before he went to dinner, and before he went to bed. Looking back, I could almost believe that we spoke more often when he was away for work then when he was home. Call it a twenty-first century marriage.

But that’s not much of a story. No blip. Nothing obvious. If there was anything subtle to notice, I wasn’t there to witness it.

I didn’t have to search too hard for a story from another year. I remember this week in 2016 too well. It’s a week I’d promised to return to regarding a topic that is all too familiar to many cancer patients: hair loss.

Two years ago today, Matt started losing his hair. Not from the chemotherapy, which is the usual cause of hair loss. His hair loss was a direct result of the radiation he’d been receiving five days a week for the past month. Which meant, his hair loss was confined only to the area receiving radiation, the front left side of his hair.

When Matt and I walked into Hackensack for our very first appointment, we took the elevator down one flight to the neuro-oncology floor and sat in the waiting room among all the other patients. We were easily the youngest couple in the room by two decades. There were patients in wheelchairs, caregivers with tired eyes and bleary expressions, and a man with thick, wild hair surrounding a perfectly circular bald spot on the left side of his head. And I remember looking around and thinking this won’t be Matt, that can’t be us; we are too young and too close to happily ever after to have it ripped away. The life we have is too special to lose.

After we left the appointment, Matt remarked on the man we’d seen. We assumed that the bald circle was where the man had received radiation. (And from then on, I imagined Matt’s radiation as a laser beam into his skull. Though, I’m not sure that’s accurate medically.) Matt said he didn’t understand why the man wouldn’t just shave his head. Why walk around with a perfectly round bald spot?

Matt’s hair fell out slowly. At first, a few wisps on his pillow. I remember standing in the kitchen with Matt debating what he should do. Could he hide the hair loss with a combover? Should he shave his head?

Vanity certainly factored into Matt’s self-consciousness. But I think the debate to shave his head or not spoke to something more than vanity. It spoke to perception, the way he saw himself and the way he worried others would see him.

After diagnosis, but before losing his hair, when Matt looked in the mirror, he didn’t see a man suffering from a terminal disease. He could believe that when strangers looked at him, they didn’t see a man who had a disease that carried an eighteen month prognosis. He was simply Matt. After Matt started losing his hair, he was still Matt, but when he looked in the mirror, he saw the missing patches of hair and the scar that had been mostly hidden. In other words, he saw the cancer. Everyone who looked at him could see the cancer. That invisible monster had been made visible. Those first few wisps made it all real in a way surgery, chemo, and radiation had not.

Despite frequently joking that he didn’t mind losing his hair because it wasn’t his best feature, the idea of shaving his head didn’t sit well with Matt. Suddenly, we understood the man in the waiting room with the wild hair and the obvious patch of radiation baldness. Suddenly, Matt was the man in the waiting room with the obvious patch of radiation baldness and the uncertainty over what to do next.

Turns out, I was wrong when I said Matt would never be the man with the radiation baldness in the waiting room. I was also wrong when I believed Matt would never be the patient in the wheelchair and I would never be the caregiver with the tired eyes and the bleary expression.

But I was right, too. Because we were too young to have lived what we lived and we were too close to happily ever after—in our twenty-first century marriage—to have had it ripped away. And we did have something too special to lose.

I think, maybe, the cruelty of brain cancer—all cancer—is everyone in the waiting room had something too special to lose.

For Matt and me, it’s gone, but not lost. It’ll be preserved in memories and photos and, hopefully, if I succeed, in this blog.

I have a feeling that when something is too special to lose, it can never be truly lost. I hope so, anyway.

 

July 30, 2017: Hope Ground Into Conviction

When Matt slept late on July 30, 2017, I remember not feeling too worried. He had good reasons for sleeping in. Not only had we been out late the night before, but also, our new nurse at Duke had warned us that Matt might begin to feel the effects of the chemo around week three, which was nearly upon us. I remember being happy Matt was getting some rest. He was planning to leave that afternoon for a two night corporate retreat and that could mean late nights and early mornings.

I took G and H to the lake to get them out of the house. Matt stayed home and packed. Around two, I texted him to make sure he ate lunch before he left. We continued with the “Or I am some steak” joke, which we both seemed to still think was hilarious.

While the kids and I were out, Matt sent in the final, nonrefundable payment for a November vacation we’d planned with G and H.

A headache, a blip, strange behavior, a confused text message, exhaustion. And yet, we didn’t hesitate to pay for a trip in November.

In the beginning of our story, our hope was founded on nothing but desperation and a few uttered sentences by the doctors. In the middle, our hope was founded on the 60 Minutes special touting the poliovirus as the cure. As we approach the last third of our story, it occurred to me that one year ago today, our hope was based on all of that—desperation, uttered sentences, that 60 Minutes special—and something else. Hope was based on something more tangible. At this point, hope had been ground into conviction.

We no longer simply hoped Matt would get through the bumps in the road. We expected it. We’d been through so much worse than a headache, a blip, a bout of strange behavior, a confused text message, and we’d bounced back—he’d bounced back—every time.

Hope, now, was based on previous experience. Hope, now, had been transitioned from something intangible to something solid, to memories of days and weeks and moments we could point to and say: been there, done that, overcame that.

The sum of your experiences. We’d made miracles in the past, and without a doubt, we’d make them again in the future. By November, we’d be back in an upswing.

The collapse of that particular (unsound) logic is often what makes post-hope feel unpredictable and out of control. The knowledge that things will be okay because things were okay before has failed, and the fact that things might not be okay is never far from my mind. It makes every moment feel volatile.

The other day, I received news that could once again turn our—G, H, me—lives upside down. Nothing devastating, but adapting to the news will require that we—G, H, me—blaze another new path. And starting down a new path in an unpredictable and out of control post-hope world is terrifying, and simply exhausting.

And apparently, impossible. Because as I sat in the car, listening to G and H argue, waiting for insurance and pharmacies to get their acts together, trying to figure out how I was going to manage this new path alone—all while missing a friend’s birthday party—I felt the tears, the terror and the exhaustion.

Then a particular song came on the radio. And I took a breath. And for a moment, for a heartbeat, it was there. An ember. An ember of hope still burning. Not based on past experience. Not ground into conviction. But an ember, nevertheless. An ember just bright enough to believe it will all be okay.

Just bright enough to believe hope hasn’t completely vanished in post-hope.

July 29, 2017: A Dependably Fun Night

July 29, 2017 brought another last. Another last I only realized with the help of hindsight. Another last that I look back on and think why didn’t I pay more attention.

One year ago today, Matt and I went out with friends to the lake’s annual adults-only beach party. We’d attended this lake party nearly every year since we moved to town. And every year, it’s a dependably fun night, though no night can match the magic of our very first lake party. Five years ago, Matt and I, still in the fog of new parenthood, realized there is a social life after kids—and it rivals, somewhat, any night Matt and I had in the city (at least any night in the city after we’d aged out of Meatpacking District clubs and gotten bored of Murray Hill bars).

Throughout the night, Matt and I separated and found each other, as we always did at parties. We mingled individually and together. I remember checking on him more than usual and feeling slightly overdramatic as I did. He was fine each time.

I texted him at 8:57 to see if he was getting something to eat, and he responded at 9:02: I would. Or I am some steak.

When I found him, unsurprisingly, on the line for steak, he laughed at his own mistake, made some self-deprecating joke. I remember laughing, too. The panic was there, but it was easy to find reasons to push it aside. Matt was tired, he was texting too fast, and though he wasn’t really drinking, everyone around him was and maybe that careless euphoria was contagious. And, honestly, it was the lake party, a dependably fun night. We—I—could choose to obsess over one text message or laugh it off and enjoy just being together, at a party, with friends.

The night ended for us when the band gave way to a DJ, and the DJ changed from playing early 90s R&B to something that wasn’t early 90s R&B.

We left and didn’t consider that we—Matt and Elaine—might never have a night like that again, to separate and find each other in the crowd, to mingle individually and together, to leave when the DJ stopped playing the music we liked.

This night is surprisingly hard to revisit. I was caught off guard by the rush of emotion making it difficult to swallow. Not only because July 29, 2017 is a last, but also because this post is a first.

July 29, 2017 is the first time in our story I’ve found a date that I can point to and say: There. I lost a piece of him there. I lost for forever the part of him that loved going out to a party, that wanted to socialize and leave when the DJ shifted to a different genre, right there. After this night, the Matt that liked to go out ceased to exist.

It’s an imprecise observation, obviously. I very highly doubt that the tumor caused any part of Matt to fade the moment we walked away from the dance floor. But in revisiting the night, I can’t help but feel as though it’s true. Matt skipped the next party, and the next, and I started missing—and never stopped missing—the Matt who wanted to go out and be out, who small talked with strangers and made me dance when I hate dancing.

Of all the pieces of Matt to lose, zeroing in on this piece feels trivial. I’m almost embarrassed to admit I noticed or cared. But I did and I do. First, because I didn’t want to lose even the trivial slivers of Matt. And second, because I think, maybe, I lost a part of myself then, too. The piece of Matt the tumor stole so unceremoniously was also a piece of us, and therefore a piece of me.

The visual that comes to mind is a Venn Diagram. If you take out even a dot from where the circles overlap, both circles now have a hole.

This year, I went to the lake party. And as I looked around the venue, I knew the hole carved out one year ago today was still missing. I was not the same person I was a year ago today, who laughed with Matt because “Or I am some steak.”

The grief wave that hit was for the loss of Matt, always, but also the loss of us and of me.

My intention is never to make anyone reading along sad. My intention is to never walk away from a post and make myself sad. So, how to turn around what feels like a heavy post? How to make all of this lighter? The answer took longer to find than I would have liked, but writing doesn’t always comply with my self-imposed deadlines.

I think the way to turn this heavy post lighter is with this reminder: a dot is a dot. Maybe that dot is gone forever. Maybe not. Maybe it’ll be filled by some other shape. Maybe it’ll grow bigger than a dot. Either way, a dot doesn’t define a story, then or now.

(And if that answer feels insufficient, then there’s always early 90s R&B.)

July 28, 2017: Things Left Unsaid*

There’s not too much to tell from the story of one year ago today. Matt’s work drama, camp theme days, and the Nordstrom’s Anniversary sale dominated my text messages and emails. Matt and I ended the day with a glass of wine on the deck after the kids went to bed.

As has become the routine on these quiet days, I cycled back through my email and text messages. Most of what I found was the static that fills in the time between the big, memorable life moments, but two years did stand out. 2014, the first time an agent requested to read one my books—my first novel, which was, and is, admittedly terrible and was rejected within four months—and 2012, when Matt and I ventured into the city and tried to have a public meal with a baby and toddler in tow.

Unsurprisingly grief vibrated through both memories—I re-read the email and vividly remembered calling Matt with shaking hands, knowing his excitement would rival mine; and I couldn’t stop staring at the picture from 2012, when our family had been so young and innocent, and adorably overwhelmed—but no particular story emerged to link those years to our tale of hope.

I stared at this half-written post for too long and tried to think of something to write. Nothing came. The problem was that the story dominating my thoughts was not one from a year ago, or four years ago, or six years ago. What I wanted to write about could not be found in any text message or photo or half-remembered conversation I had with Matt over a glass of wine after the kids went to bed. The story I wanted to write today is brought exclusively from post-hope, in looking back at the things Matt and I left unsaid.

A few days ago, I finished reading (listening to) the memoir When Breath Becomes Air by Paul Kalanithi, a neurosurgeon who was diagnosed with terminal cancer just as he was on the cusp of achieving all his dreams. Too often I had to stop the story to blink back tears because the similarities in our tales scraped the surface of raw grief. I saw too much of Matt and me in his story, from his description of how his patients and their spouses reacted to the news of a newly discovered cancerous brain tumor (pgs. 91-98), to the utter terror I know his wife must have felt when she heard the word leptomeningeal (pg. 203). I related to the story on nearly every level, except one.

Dr. Kalanithi and his wife discussed mortality. They stared tragedy in the face and searched for deeper meaning in a way Matt and I did not. We never had a sweeping declaration of love conversation. We never talked about what he would want our life to look like if he couldn’t be here. I never asked him to write letters to G and H for the big events in their lives.

But after I read Dr. Kalanithi’s words, I wondered if we should have. I wondered if it was my fault that we didn’t. Had we—I—kept our gazes so firmly pinned to hope—that distant light on the horizon—that we failed to find some deeper meaning in our present? Should we have found a way to nurture hope and stare tragedy in the face?

I suspect the answer to that question isn’t easy and more complicated than is appropriate for a single post (which is getting too long). I have a feeling this idea of things left unsaid and missed opportunities will become another theme that I circle back to as the story slips into those dark days I keep warning about.

For now, it’s enough to introduce this new theme and end with this thought.

In 2014, after I told Matt about the agent request, he didn’t temper my excitement by reminding me it was just one agent who’d likely merely skimmed the first ten pages I’d sent in a cold query. Neither of us thought maybe it was a bad idea to get our hopes too high. We both started dreaming about best seller lists and movie deals. The highest star in the sky.

When the doctors told us Matt had terminal cancer and then 60 Minutes showed us there was a potential cure, Matt and I didn’t do anything but what we always did: we let our hopes soar to the highest star.

The blank space of things left unsaid will always be there, but so will the knowledge that given the choice, Matt and I reached for the very highest star in the sky every time, and never worried about falling. Maybe that means, for us, our deeper meaning is not found in the things left unsaid, but in the way we approached our truth.

Maybe. Hopefully.

*Fun Fact: Things Left Unsaid is also the title of the first short story I wrote. Matt encouraged me to submit that story to a contest where it won honorable mention.

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Young, innocent, and adorably overwhelmed in 2012.

July 27, 2017: A Thank You Card

For reasons I can’t remember, the kids and I picked Matt up after work on July 27, 2017. I don’t remember why he didn’t have his car with him, though I suspect it had nothing to do with brain cancer and everything to do with the logistics of turning in a car to the dealership after the lease had expired.

What I do remember is arriving at the office at the end of the day with two kids who thought Daddy’s work was a playspace made specifically for them, and a thank you card in my hand.

Before I reveal for whom the card was meant, I have to sidetrack for a few paragraphs.

Glioblastoma is unparalleled in its cruelty in a thousand different ways. The disruption to the mind-body connection. The loss of self and humor, and the destruction of the indelible spark that makes you into the unique version of you. But Glioblastoma is also simply a disease, and subject to the same cruelties, the same indignities, as so many other diseases. Including the indignity of feeling like you—you who is fighting for your life, who is trying to survive in a scary, new world—is nothing but a customer.

The state of the country’s healthcare system is not a topic I’m going to even approach in this blog. It’s not the story I want to tell, but I cannot give an honest account of our battle without at least mentioning my feelings about the fact that Glioblastoma, like all cancers, is billable. I would be lying if I never mentioned how jarring it was to see the credit card machine on the check-in desk at Duke, beside the sign that read “payment is requested on the day of your visit.” I wouldn’t be telling the truth if I never wrote that there was something supremely disturbing about needing to meet with the billing coordinator at Hackensack before being allowed to see the doctor who could hold the key to saving your life.

Doctors and nurses should be paid (well) for their time and energy. Medicine costs money. All of that is true. But also true: It felt like a betrayal to feel like a customer at a business we never wanted to patronize, especially when the ultimate price was life. Contradictory beliefs, I know, but I’ve said before that the world of brain cancer is full of contradictions.

During our visits to Duke, Matt and I spent a lot of time walking through the infamous Duke Gardens and discussing this exact contradiction. I was more hurt by the cold sterility of the business side of fighting for his life than he was. As always, he was more practical. He was merely annoyed by the amount of paperwork, the nonsensical codes used by the insurance company, and the ever-present billing errors.

Which brings me back to the card in my hand on July 27, 2017. The card was the very, very least Matt and I could do for the woman who worked human resources in Matt’s office. She helped us understand insurance jargon and sort through the mountains of paperwork arriving in the mail. And she patiently repeated the same process the next month, when we got another statement and were inevitably, again, confused.

So often a battle against a disease turns into a battle with paperwork. And too often, that battle with paperwork steals the energy required to keep hope ablaze. Because, though hope is a choice, it is also a commitment. One that requires energy and mental space. Matt and I were beyond fortunate to have someone kind and knowledgeable helping us in the battle against paperwork, freeing so much of our energy and mental space to fight the true battle, the battle for Matt’s health and his life.

On July 27, 2017, Matt and I just wanted to say thank you, knowing thank you would never accurately express how truly grateful we felt.

I’ve said before that Matt and I weren’t lucky medically, but so incredibly lucky to have the support we did. Family, friends, and colleagues who bore the brunt of so many side battles so we could focus on the one that mattered. I truly don’t know that we could have found a way to return to hope each time it faltered during the darkest days without the support that we had. Even now, in post-hope, we—and I’m including Matt in that we, because in this, I am confident he would agree—will always be unendingly grateful.

What remains after the last ember of hope vanishes? It’s a question I hope to answer for G and H and myself by the end of this story. I doubt the answer will be simple. I am nearly positive it will include gratitude.

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July 26, 2017: Beautiful and Ethereal Things

The day before, a blip. The next day, nothing.

One year ago today, Matt went to work, participated in meetings, and, presumably, gave presentations without even a trace of another blip. He was fine and it became even easier to believe that the episode from the day before had truly been nothing but an isolated incident. A hiccup on the road to healing.

When a friend texted me to ask how Matt was feeling, I wrote: Good!!

Two exclamation points. I was exuberant. A blip free day. When days ago a blip free day had been the norm, now suddenly a blip free day was a victory over the cancer. A blip free day was meaningful and evidence of more light on the horizon.

Looking back, I think the way we were nudged into new normals, into believing yesterday’s average was today’s victory, is how I lost Matt, and how Matt lost himself, without realizing it. Because after we hit a low, all that mattered was that we came back up. We were so elated that we’d come back up, we didn’t realize we were still a millimeter shy of where the previous high had been. What’s a millimeter?

But, millimeters add up, as do seconds and minutes and blips.

A year ago today, I visited a sleepaway camp with a friend who was looking at options for her son. I’d wanted to go to keep my friend company, but I was also interested in seeing a sleepaway camp and getting a frame of reference for our (now only my) future search.

On the way home, I remember getting choked up as my friend eased onto the exit ramp that would take us off Rte. 80. Nothing in specific had struck me, but somehow the question of “what if” slipped into my mind. Specifically, what if, in two years, while G was at sleepaway camp, something happened to Matt? Another new tumor? How could we even contemplate sending her away when the ground beneath our feet was so very fragile? Inlaid with hope, of course, which made that ground beautiful and ethereal. But beautiful and ethereal isn’t actually supportive and sturdy. Only a clear MRI could make the ground less fragile.

Most days, I purposefully kept “what if” away from my thoughts. But I dipped into that question three times during the last months of our year of hope. Once, a year ago today, once on a quiet August evening, and once in November.  Three times. And each time, the overall feeling that accompanied that short dip into “what if” was guilt. Even wondering “what if” felt like a shameful betrayal.

A betrayal, because asking “what if” almost felt like surrendering hope, like admitting I’d let statistics stain my confidence in Matt and Duke and the poliovirus. In retrospect, even my traitorous “what if” questions were filled with hope. Because a year ago today, the worst future I could imagine was one in which two years had passed and we were still walking on fragile ground.

A year ago today, the question was never what if the ground gave way completely. That simply wasn’t an option.

Here’s what I’m realizing about hope. Hope may not be a supportive and sturdy ground on which to walk. Hope may be only beautiful and ethereal. But sometimes beautiful and ethereal things have wings. And sometimes, when you have wings, you don’t need to walk when it’s too hard. You can find a way to fly.

And we did.

When the fragile ground gave way, when we couldn’t walk anymore, we flew. We kept going on wings of hope long after the chance of a clear MRI disappeared. Maybe, for a while, we’d even managed to soar.

July 25, 2017: A Blip

Sometime between 10:49 a.m. and 1:23 p.m. on July 25, 2017, Matt called me. We rarely spoke on the phone during the workday—if we had, this blog wouldn’t be possible. So when he called, I answered. He told me something strange had happened at work. He sounded calm, but the buried terror beneath that composed exterior caused my heart to miss a beat.

He’d been sitting in a meeting—Matt used to joke he had meetings about having too many meetings—and he’d looked down and couldn’t read the numbers on the paper in front of him. He’d looked at the presentation he’d prepared and couldn’t find a way to speak the words in his mind.

His words were trapped. The connection between mind and body, thought and speech, had been disrupted. I know the level of panic I reached when Matt recounted what had happened, but I cannot imagine the level of fear and distress Matt might have experienced. I don’t know the kind of strength he must have summoned to escape that fear and distress. Something more than heroic, right?

I told Matt I would call the doctor. He told me not yet; the episode hadn’t lasted long. I told him if it happened again, we’d have to call. He agreed. And I dropped it.

Because Matt hadn’t called me because he wanted to make me panic. He hadn’t called to make me worry. I think, though I can’t know for sure, that he called because he needed to be grounded. He needed to be reassured that he was okay, and we were okay, and everything was still going to be okay. He needed a dose of hope, and for Matt, I could reach around my own panic and fear and distress and find hope to give him.

I did the only thing I knew how to do. I developed a cute theory to explain the episode in the morning meeting. I told him it was a blip. A blip and nothing more. A short, random, isolated incident.

I spent the rest of the day finding a reason to text him, though I managed to ask if he was okay only twice. The first time I asked, he told me he was fine, but he’d only spoken to one other guy and he hadn’t had to read or count anything. The second time, after his afternoon meeting (meetings about meetings, right?), he didn’t quite answer the question and I had to ask again, more directly. He said, “Yes, just insanely busy.” And I dropped that line of questioning again. I let Matt change the subject.

Because the episode had passed and he’d accepted the theory I’d crafted for him. It was a blip. One time.

An hour later, Matt texted me this: Going to book flight to Napa. All good?

I responded: Yes!

Over the next half dozen text messages, we focused on nothing but flights and logistics.

Within the span of a few hours, hope had again replaced fear. A blip was not a reason to once again change our plans for Matt’s 40th birthday party. A blip would not impact a trip planned for October. The idea that our lives might be unrecognizable by October, that Matt would not be well enough to travel across the country to celebrate his birthday, never even crossed our minds. Not for a moment.

The speed of it all is simply baffling. A year ago, Matt experienced a blip. Today, in post-hope, the six month mark is achingly close and I am still bewildered by the swiftness with which this disease assaulted our lives, stole my husband, took a life.

One year ago today, we didn’t know that a blip could cause your heart to miss a beat, and also, eventually, cause the entire world to start spinning in the wrong direction. We didn’t know a blip was a siren screaming a desperate message of warning into an invisible void.

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July 24: The Memory of An Absence

A year ago today, the story looks identical to one I’ve told too many times. Camp and t-ball for the kids. Work and a late night (evidenced by a “hangry” bitmoji at 9:39 p.m.) for Matt.

For some reason, I remember this t-ball game more than I remember any of the others in the season. Maybe because the field was an obstacle course embedded with deep puddles and we couldn’t get to the bleachers without squishing through mud. Maybe because I remember worrying H would slip into one of those puddles and then refuse to ever play t-ball again (which is more or less how my childhood soccer career ended). But I don’t think so. I have a vague memory of hoping Matt would make it to this game. And an even vaguer recollection of him hoping to make it to the game, too.

I’m not sure why this t-ball game stands out, but it feels relevant in the way the last lingering note of a melody feels relevant in the moments before silence descends. But that could be because I’ve read ahead in the text messages, and I know every moment free from the weight of worry from here on out matters that much more than before. Or, possibly, I’m simply feeling sentimental because this Post-hope year has found new ways to challenge and torture, and we—G, H, and me—, have been forced to once again redefine how hard we want to fight through the noise and chaos.

The other night I took G to her first concert. I can say with uncompromising certainty that the night will be one she remembers for the rest of her life. I can say with the same uncompromising certainty that watching her watch the concert will be something I remember for the rest of my life. I will remember her unfiltered joy, the wonder in her face, and also, because this is post-hope, the grief wave that hit her the moment we walked into the concert venue.

Amid the photo ops and torrential downpours, my sweet eight-year-old daughter who deserved a night of unblemished joy pulled me aside and said, “I’m really sad I can’t tell daddy about this.”

At the end of the concert, G told me she wanted to take singing and guitar lessons. I told her okay and was struck, not for the first time, by the truth that she—and H—are limitless. They each have a future full of limitless possibilities and Matt won’t be there to watch alongside me. My own grief wave.

Grief seems to hit hardest when we’re unprepared. Grief is, apparently, the antagonist who takes the cheap shot while the hero isn’t looking.

I wrote a while ago that every happy moment is tinged with sadness. G’s first concert was no exception. The grief wave roared into our night without regard for the laughter and fireworks and enthusiasm around us. Grief crashed against our hearts and could have destroyed a night which held the potential for magic.

Grief failed.

The night was magic and more. The night was friendship and memories, music and the discovery of a new dream, which may or may not be the dream next year on July 24th; she is limitless, after all.

A year ago today, Matt didn’t make it to a t-ball game and his absence made a mark in my memory. In post-hope, Matt’s absence will likely make a mark in every memory. Then and now, that mark is exhausting and challenging and sad. But now, unlike then, we’ve been submerged in the densest parts of the darkness and we’ve fought our way through. Now, unlike then, we are acknowledging that this is hard and not letting a stumble define our journey. Now, unlike then, we know the story doesn’t always have a happy ending and we are nevertheless actively choosing hope.

The fact that we can do more than we did last year is simply exhausting and challenging and sad. And, also… well, not exactly magic and more (though that would add a nice symmetry to this post), but something else, something profoundly honest and determined and forever hopeful.

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Then and now. And always limitless.

July 23, 2017: Daddy’s Headaches

A year ago today, Matt and I took G and H to the Bronx Zoo. The day was mostly overcast and the temperature never reached into the boiling hot range. The animals were out from their hiding places and active. We rode the monorail, chased a peacock, and ate lunch after barely escaping a light drizzle.

When we returned home, Matt had a headache and needed a rest. I’m sure my thoughts went straight to the tumors, straight to the growing anxiety that wished the August 16th MRI would hurry up. Though truthfully, rushing to blame brain cancer wasn’t fair. We’d had a long, tiresome day. G had accumulated over 13,000 steps on her Fitbit. We’d crawled through a modest amount of traffic on the way out of the Bronx. Maybe we all wanted nothing more than to sit and not move for a while.

Then again, G was seven-years-old and H was five-years-old, and seven- and five-year-olds have boundless amounts of energy.

Over the last two weeks I’ve written about Matt’s minor headaches. I’ve noted behaviors that weren’t quite right, but barely visible—likely invisible—to others. I’ve noted that I noticed and worried and spent too much time obsessing. But while Matt was growing symptomatic in inconsistent micro-bursts and I was growing increasingly anxious, we were also parenting. Every day.

So what about G and H? What did they think about the fact that they had to play quietly now because Daddy had another headache? What did they think of the way the battle against a disease seemed to have ratcheted up a notch?

Truthfully, I don’t know. Thirteen—almost fourteen months—into our battle against Glioblastoma, Matt and I had told G and H nothing more than we’d told them initially: Daddy had headaches.

They knew Daddy had headaches and sometimes that meant they needed to be a little extra quiet, a little bit more calm. Or, Daddy had headaches and sometimes that meant Daddy was too tired to play and Mommy needed just a minute to do one more Google search. They knew nothing more. Not the word cancer. Certainly not the words Glioblastoma and chemotherapy. They didn’t know to anticipate MRIs or hope a drug named CCNU was shrinking a tumor in the right parietal lobe of Daddy’s brain.

The logic that had propelled us early on remained intact: G and H didn’t need to know the specifics of Matt’s illness because they didn’t need to worry about something that would soon be a distant memory. They didn’t need their innocence shattered by this word—cancer—that had infiltrated our lives because Matt’s status as a cancer patient was only temporary.

I don’t remember what happened after the zoo, after Matt’s headache passed. But I don’t need to remember. I can picture the scene that is missing from my memory without closing my eyes. All six foot one of Matt stretched out over G’s pink comforter, his feet bumping up against the army of stuffed animals and pillows (which, somehow, in this post-hope year, continues to multiply). I can picture him reading The Day the Crayons Quit and making different voices for all the crayons, or maybe reading Press Here and encouraging G and H to blow on the pages. I can picture their laughter and the way they looked up at him without wondering what was happening in his brain. I can picture the way they said good night and went to bed without an unknowable weight on their minds.

One year ago today, despite the micro-bursts of symptoms and the anxiety, the hope and certainty that Matt would be cured, not simply cancer free, was unwavering. And for that reason, telling G and H that Daddy had headaches was enough.

Time will tell whether we made the right choice. But knowing how thoroughly their innocence will be shattered by the end of this story, I can’t help but look back and feel grateful that our hope preserved their innocence for one more day.

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July 22, 2017: Mornings in Pajamas

For the first time in a very long time, we—Matt, me, G, and H—didn’t have anywhere to rush. On the morning of July 22, 2017, we didn’t have to get up and out of bed to hurry to t-ball or soccer or a birthday party. We had nowhere we needed to be until the afternoon. So we did nothing but sit around in pajamas and watch Descendants 2 on the Disney Channel. That afternoon, we went to a barbecue. The kids swam, the adults chatted, and afternoon slipped uneventfully into evening.

The messages and emails do not reveal what, if anything, I noticed about Matt that heightened my anxiety. Given how soon things will start to happen, I’m sure I noticed something concerning, but I didn’t text anyone about it. I didn’t email or call Duke. And I definitely didn’t bring up my concerns to Matt. (He was doing the hard work of healing. He didn’t need even an ounce of my worry to burden him.)

If there was something to notice—and I do mean if because the possibility that I was looking too hard is never far from my thoughts—I kept my worries to myself.

One year ago today, the story is nothing but lazy mornings and sun-drenched late afternoons.

In the days after Matt’s doctors told me he had weeks remaining, the kids’ therapist suggested we complete one more family project, create one more memory together. The idea was to have Matt participate. But we ran out of time. The prediction of weeks turned out to be too generous; Weeks was only days.

But in Post Hope, the pattern is always the same: nurture the heartache and adapt to the reality. The other day, we—G, H, and I—began work on that family project, threading Matt’s memory into each piece of the design.

A part of the project required us to think of a word to describe what we did as a family. G and H fell silent. At first, this silence broke my heart. I thought: we didn’t do enough. We’d had so much time and we didn’t do enough as a family. Should we have spent those lazy mornings engaged in something defining?

We’d tried skiing years prior and it hadn’t quite stuck (although, I’ll asterisk this sentence and return to it in December). We’d tried ice skating. We didn’t go on long family bike rides or hikes or picnics. We couldn’t think of a single activity that defined what we loved to do as a family, and the silence that filled the space where that activity should have been cut to the very depths of my soul. Guilt and regret knotted up in my stomach. We should be able to think of a word, right?

The silence didn’t last. After a moment, G spoke up. Then H. Then we all had words. We couldn’t think of one word, so we found many: basketball, LBI, Jets, zoos, movies, bagels, mystery rides, BBQs, and more. After today’s post, I can add “mornings in pajamas watching the Disney Channel” to the list.

As I came to the end of today’s post, I tried to figure out how to link all of the rambling I’d just typed into our story of hope. Maybe: appreciate the little things; don’t forget to remember how it felt to curl up on the couch with two kids who’d left toddlerhood behind. Always a good reminder, but all the writing advice I’ve read says to avoid cliches. Maybe: regret is, unsurprisingly, razor sharp. True, but regret is also a poison. And though I have regrets, I refuse to let our story be ruled by razor-edged poison.

The thought I kept cycling back to was this: maybe a year ago today we should have spent the morning on some activity that would have defined our family life, and maybe we should have started the family project before the doctor spoke the words that extinguished hope for good. But that didn’t feel right. I’m not telling a story of should (which is suspiciously close to regret). So just like with the art project, I took a moment and kept looking.

And found this: in not doing what we should have done in a perfect world, we found a quiet joy in a movie, we found a silent strength in changing our Post Hope plan. We found a dozen words instead of one.

We found a way to write our story the way we wanted it written. And I think, what I’m learning, is that hope is the story you tell when you give yourself the space to take a minute, take a breathe, ramble, even, and see what happens when you don’t say should.