April 30, 2017: Rollercoaster

April 30, 2017, we drove home from the rented house. We were supposed to stop at a friend’s birthday party, but, since my hopes for a quick, magical change in Matt’s symptoms didn’t pan out, we canceled with some vague excuse. In April, unlike in the months to follow, I wasn’t yet describing Matt’s battle in terms of down cycles and upswings. I realized recently that I didn’t start using those words to rationalize away a doctor’s warning or explain why we had to cancel plans until around September or October, when we’d gone through enough ups and downs that I’d begun to see a fairly cliche roller coaster pattern emerge, one where each hill never reached quite as high as the last and each valley dipped just that much lower than before. Ups and downs until finally we lost the momentum to soar at all.

That day would be our last day all home together before Matt left for Duke. It was our last day living with the tremendous weight of the unknown on our shoulders, hoping with one breath that this upcoming appointment at Duke would change everything for the better, terrified with the next that it wouldn’t, angry in the third for ever letting my mind go there for even a second.

It was a tough-ish day. That’s how I described it to a friend. Tough-ish. Ish, because I didn’t want to admit to anyone, not, myself, Matt, or our friends, that I couldn’t handle one more day. Tough, because G had started to say that daddy was mean now.

He wasn’t mean, not in the actual sense of the word. He was frustrated and irritable, he walked out on conversations and lost his patience. On top of everything else he had to deal with, he was, like all of us on that day, living through the day just to get to the next, clinging onto a vague sense of hope with no idea of what to expect.

When we chose to enter the polio trial, we did so knowing that less than a hundred people had ever undergone this experimental procedure. We believed in the treatment so much that it didn’t matter how untested it was. It had cured at least one person, 60 Minutes had run two specials on it, and that was enough. What we didn’t expect, or what I didn’t expect, was how isolating it would be and how difficult it would be to find anyone else who could relate to our specific situation, who could tell us from personal experience not to worry because the journey was a roller coaster and an upswing would come. Someone who could turn vague hope into precise hope.

Because vague hope is hard to cling to. It’s exhausting and frustrating trying to hold onto something that might not be there. You do it because it’s better than nothing.

I still don’t know if the roller coaster pattern is common with brain cancer patients, polio virus vaccine treated patients, or if it’s just how Matt’s illness manifested. But I know, Matt’s incredible ability to bounce back was due, at least in some part, to his amazing brain and his determination to beat the disease.

April 29, 2017: Past Miracles

I wrote in my very first post back in March that I wanted to explain why we did what we did. How could we dare to hope given the enormous odds we faced? Well, they (whoever they is) say a person is the sum total of all his experiences. That quote feels particularly relevant today, April 29, which is a day I always mark in my prone to living in the past mind.

Because if Matt and I are the sum of our experiences, then our experiences taught us that we could make miracles happen.

Back in 2010, G was born via emergency c-section nine weeks too early. At 31 weeks pregnant, I’d been having back pain and she’d all but stopped squirming. The doctor told us to come in for an appointment. One stress test and one ultrasound later, another doctor I’d never seen before threw open the door to the exam room and said, (and I may be exaggerating, but it was eight years ago!) “we have to get this baby out now or she’ll die.”

Cue panic and tears. G was delivered with a crash cart waiting beside the bassinet. The neonatal doctors whisked her away to the NICU before I’d ever heard her cry. That night, the doctor told me she was in critical condition and she may not make it through the night. The nurses said they’d never seen anything like this. More tears, more panic.

She did make it, with more than a few bumps in the road, and defied every expectation. We called her our miracle baby and on April 29th, after eight weeks of agonizing over setbacks and celebrating tiny milestones, we brought her home. (In a car stuffed with moving boxes, with a floor lamp hanging over her head, because new parents have no idea what they’re doing and who thought it was a good idea to give us a baby?!)

When things with Matt seemed impossible, when it was hard to ignore the statistics and the symptoms, and the bumps in the road felt like craters we’d never emerge from, I thought back to April 29, to how we’d been through hell once before, stumbled over bumps in the road, but still defied every expectation. And because we’d done it once, it was only reasonable to believe that we’d do it again. Sum of your experiences.

On April 29, 2017, we were still away for my mother’s birthday, the second of three days. Not much had changed in terms of Matt’s symptoms, May 1st remained impossibly far off, and my Spring allergies had a revenge story of their own to tell. And yet, April 29th was a reminder that miracles can happen.

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Way back photo of G on discharge day.

April 28, 2017: Good Is Relative

Yesterday, I said April 27, 2017 nearly broke me. Here’s why it didn’t completely.

The morning of April 28, 2017, we woke up in a house we’d rented with my mother, my sister and her family, and my brother and his family. For the first time in days, some of the pressure that had been making it impossible to breathe was lifted.

Matt’s symptoms hadn’t improved. If anything, being away from his familiar environment highlighted all the pieces of him that had disappeared. On vacations, Matt was the guy who chatted up the concierge, cracked jokes with the waitress, and talked his way into the upgraded room package. But this time, all that Matt-ness was missing. He was  almost unrecognizable from the man I married, the one who would never miss an opportunity to dominate in a game of Scattegories. Around this day, I learned I could miss him, even while he stood right in front of me.

And yet, the text I sent that day to a friend who’d asked how we were doing read: we are good!!

Partly, because I wanted it to be true. Partly because I’d apparently become quite the liar in the last few days. And partly because good is a relative term; we were good compared to the day before.

The day before had been bleak. We’d been alone and had fallen so far into the depths that we couldn’t see beyond the hopelessness obscuring all the reasons we had left to hope. But then we woke up in a rented house, beaten down and nearly broken, and we stepped into a kitchen full of family and a reminder that we weren’t alone. Someone took the kids to the park. My brother and brother-in-law took Matt to do whatever guys do. It wasn’t just me anymore.

Suddenly it didn’t feel as if I was suffocating. And once I could breathe, I could see past yesterday and remember all the reasons we had to hope that these hard days were nothing more than bumps in the road: Duke wasn’t worried, the polio virus vaccine had cured people, Matt had all the favorable genetic mutations, we had an unbreakable support system. Everything could still be okay.

So instead of breaking, we raced (and crashed) Go-Karts, high-fived a few mascots, and clung back onto hope, remembering we didn’t have to do it alone.

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April 27, 2017: Plastic Bags

I wish I could soften the sharp edges of this story. Every instinct I have screams at me to sugarcoat April 27, 2017. But to do that wouldn’t be fair to Matt’s legacy, his battle, or his story, which does get dark and heavy, and at some point I won’t be able to promise an upswing.  How could I, given the ending?

I owe his story just the truth, no more and no less.

And the truth is, April 27, 2017 nearly broke me. It had been a week of living on edge and telling myself that Matt was fine and I was overdramatic. The kids were home because we were leaving for a long weekend away for my mother’s birthday. An electrician was at the house to fix the doorbell. Our alarm was going haywire. No one had packed a thing. The time we had planned to leave had come and gone hours earlier.

That day, it was just me. Whatever small effect the higher dose of steroid had conferred to Matt was gone when he woke up. He was as symptomatic as I’d ever seen him, with a healthy dose of steroid anger to top off his general state of confusion.

But somehow, I worked out the alarm (though it took me an hour longer than it would have taken Matt), figured out the electrician (who, for many reasons, must have regretted the day he was dispatched to our house), and packed the kids’ bags. I loaded almost everything into the car. We were nearly ready to go. Except…Matt’s travel bag wasn’t waiting by the front. I knew he’d been upstairs packing. I asked him. He pointed to the six or so plastic bags I hadn’t really noticed. I asked, “why did you pack in plastic bags?” He answered, “what else would I pack in?”

I know this seems small. And ultimately it’s probably not very different from trying to fill a water bottle with a cap on or forgetting how to use a spoon. But it was the earnestness of the question, the way he scrunched his forehead trying to puzzle out what he’d done that didn’t make sense, and the way I couldn’t recognize the blank expression on my sharp-witted husband’s face that broke me.

I inhaled against the crushing weight on my chest, told him his bags were perfect, and loaded Matt’s plastic bags into the car beside our suitcases. No glass shattering here. Matt asked why I was crying. I don’t know how I answered.

I know these days are hard to read; they were hard to live. And sometimes they seemed slightly hopeless. So the best I can offer during the darkest days to come, when no upswing is on the horizon, is to promise to show the moments of lightness and joy, the sparks of happiness that always appeared, and that always lit the way back to hope.

April 26, 2017: HIMYM

Early in the morning on April 26, 2017, H woke up with croup, which for him means a barking cough and swelling in and around the airway and vocal cords. (Wonderful, we needed a little more excitement.) I called the pediatrician and the only available appointment was just after three, which meant G would be home from school. No problem, I’d drag her along with me like I had a million other times.

This time, though, Matt was home. It wasn’t one of his worst days, but it wasn’t one of his best, either. He could stay home on his own and I wasn’t worried for his safety, but he was just off enough that I was afraid to leave G with him. I’d learned my lesson last week at the parade. But I knew he’d say I should just leave her with him. In the time before, that golden time when brain cancer was something that happened to other people, I would have left G home (and been thrilled about it…only one kid at at the pediatrician—what a treat!). But the time before was a distant memory, and Matt wasn’t in the best mental state, so I made up some story for why G had to come with me.

One of the topics Matt frequently brought up when he told the story of his diagnosis (which he did often, and I’ll share the story, both his and my version in a later post), was that I didn’t tell him what the neurosurgeon said immediately after the surgery. I hid the worst of the truth about his diagnosis for those first few days while he recovered. I just wanted him to have space to heal. Or I was afraid to admit the truth. One or the other. Either way, I didn’t tell him the truth and it upset him.

Knowing he wanted truth, let me explain, with the help of a HIMYM reference, why, once again, I hid the truth. (How I Met Your Mother. It’s an amazing show and I couldn’t write an entire year of Matt and me without at least one HIMYM mention.) One episode featured a concept called glass shattering: the idea that once a person’s flaws or a situation’s awfulness has been pointed out to you, you can’t unsee it. Matt and I often referred to glass shattering moments in our life. Like the time he informed me, when G was a baby who wouldn’t sleep for more than 36 minutes at a time, that bedtime was actually awful. Before he’d said those words aloud, I’d just been going through the motions of putting a baby who refused bedtime to sleep because it had to be done. But once he pointed it out, glass shatter: yes it is the worst part of the day and now I can’t unsee how annoying this actually is.

So even though I knew I should be upfront and tell Matt that I was taking G with me to the pediatrician because he wasn’t himself yet, I didn’t. I couldn’t bear to put up a mirror and force him to see what I saw. He’d been so strong and had endured so much, why drag him down? Why shatter the glass and force him to see something about himself he wouldn’t be able to unsee? (If he believed what I showed him at all, that is.)

I don’t blame Matt or the brain cancer for not seeing himself clearly. How can you ever see yourself clearly? I recently realized I don’t always see myself so clearly either. I thought I’d been mastering my grief, really winning the how-to-manage grief race, but I learned just the other day that wasn’t entirely true. When grief out of nowhere caught up with me (caught up, tackled, and stomped), I was left stunned, with shards of shattered glass at my feet, and asking why didn’t anyone tell me. (Not that I would have believed it either, by the way).

 

April 25, 2017: The Opposite of Gloriously Boring

Just a few weeks ago, in the beginning of April, I wrote about days that blended into each other because nothing much happened. Gloriously boring I said. Well, the end of April also blends together for a reason that sits on the complete opposite end of the spectrum. Nothing was boring. Every moment was charged with nervous energy and when I look back on those days, that’s all I remember, that pervasive sense of spinning out of control while needing to keep going.

But I wanted so desperately to stop spinning and slow down, and on the morning of April 25, 2017, Matt woke up and he seemed, slightly, almost, maybe a little better. He was still struggling with speech, writing, and reading, and he wasn’t exactly clear headed or witty, but he was functioning more than he had the day before and that was something; that was enough, actually. Which is funny to say because, a week earlier, I’d been panicked about these same symptoms.

When yesterday’s horror becomes today’s step in the right direction, you lose sight of which direction you’re going in. It didn’t matter, though. We grabbed whatever lifeline was thrown at us and were just happy to be going.

It seemed, at this point, as if Duke had been right in telling me to give the steroid time to work. Patience (a virtue I do not possess) had been the key all along. Matt went to work; he didn’t make it the whole day, and don’t worry, he didn’t drive, but he made it to some part (amazing brain). I took G to a playdate and H to t-ball after school. I sent a text to a friend that night and said I think we hit our lowest point and will only be on the upswing now.

Thinking back and knowing what I know is coming tomorrow and the next day, it could almost seem cruel to have let ourselves be tricked and buoyed by hope for even a few short hours. Because when we fell again, we had further to drop, we landed harder. If we hadn’t let our guard down, let ourselves believe things were getting better, maybe the next days wouldn’t have crushed us in the way they did.

I’ll never know, because we did breathe a sigh of relief when we woke up to less symptoms on April 25, 2017, and we did let ourselves believe that the worst was over. Because we had to. That’s how we survived the hard days: each time, we told ourselves the worst was over, we plucked out the moments that only skimmed the surface of rock bottom and held onto them, hoping this time we’d found the lifeline that could lead us back.

 

April 24, 2017: Filling the Hours

On April 24, 2017, I called Duke twice. They doubled Matt’s steroid (that dreaded Dex). I asked them to move the MRI earlier. They told me not to panic, to give the steroid time to work; May 1st was only a week away. Only a week. Seven days. A relatively small timeframe in the grand scope of everything. Sure, we could handle a week in limbo. No problem at all surviving seven more days of a decline that was worsening by the hour.

Even looking back, a year removed from all of it, knowing the upswing is one week away, May 1st seems impossibly far off from today. Thousands of lives are made and lost in the seven days between April 24 and May 1. In the world of brain cancer, a week could mean the difference between sending a text with a typo or two and forgetting how to use a spoon. A week is nothing at Duke, far removed from the reality of an experimental treatment seemingly backfiring with stunning speed, but, here, in a home, within a family that looked to Matt to always have the answer, it can feel like a lifetime crawling away.

So, what do you do to fill the endless hours between April 24 and May 1? You Google. You re-read every article printed about Glioblastoma, in general, and the polio virus vaccine as a cure, in particular. Then you read them again. You obsess over timelines, statistics, and facts, and find ways to distinguish your case from all the others. You get dressed and do laundry and buy whatever you forgot to buy at the grocery store the first time you went. You re-watch the 60 Minutes special that featured the first patient who ever had polio infused into their brain and re-read the transcripts from the follow up segment, searching for some clue that you missed the first time around that could explain everything. You go to meetings at your kids’ school and plan events while your mind churns over the facts you read, scrambling the details so thoroughly you need to re-read the articles when you get home.

You take over reading the bedtime stories. You hug your kids tight when you tuck them in. You live on edge.

You breathe when you can. You hold onto hope when you can’t.

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April 23, 2017: I Haven’t Noticed

On April 23, 2017, I sent this text to a friend: This is G in a nutshell. She watches Matt try to fill a water bottle over and over without taking off the lid then we get in the car and I drive. She asks why I’m driving. I say because daddy’s not feeling like himself. She says, completely straight faced, “I haven’t noticed anything different about daddy.”

It’s funny because until I re-read that text, I didn’t remember Matt trying and failing to fill the water bottle. That memory was lost in the blur of dozens upon dozens of other moments exactly like it. But now, I remember. Matt’s frustration at failing to understand why the water was spilling all over the floor. My (hopefully patient) attempts to tell him to take the lid off the bottle. His burst of steroid-fueled anger because he didn’t need my help.

I didn’t yet have the vocabulary in place, the clinical terms necessary to describe to the Duke nurse, who I was now calling a couple of times a day, what was happening with Matt. I could only give examples. He forgot to open the lid to a water bottle, he’s mixing up words and struggling to read, he’s irrational and agitated. But boiling down Matt’s mental decline into two or three examples wasn’t enough. It wasn’t then and, even now, it feels insufficient.

Because a few examples can’t describe the scope of what the kids and I were seeing, how every word and action and thought was impacted from morning until night. It wasn’t just that he tried and failed to fill a water bottle, it was that he didn’t choose his favorite bottle, and he didn’t rant about politics or bore me to tears with fantasy sports updates while he filled the bottle, and he didn’t look at me like he’d been looking at me for over ten years when I spoke to him. It was all of that, all the time.

And regardless of G’s spontaneous declaration in the car, she and H did see. The issue of what do we tell the kids returned, but this time Matt wasn’t there to wordlessly agree on a message and I was left trying to explain the unexplainable on my own. I asked the kids if they wanted to talk about anything going on with Daddy. They said no and changed the subject. And, for better or worse, I let them.

So instead of talking, we rode bikes. The kids rode ahead. Matt fell behind. Choices had to be made and I couldn’t bring myself to introduce the word cancer into their world, or to admit how savagely it had invaded mine.

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A picture from Matt’s album

April 22, 2017: Chasing normal

April 22, 2017 was not easy. Moments from this day are so stamped into my mind that I only need to close my eyes and I can feel the rain soaking through my clothes at the softball field.

G had a parade for the official opening day of the baseball and softball season. It would be her first time marching in the parade and she was excited to walk down the street with her friends, despite the light drizzle that had started. She needed to be dropped off at a certain time or else she’d miss walking with her team. We were running late and H had a temper tantrum over which sneakers to wear and I was spinning myself into circles trying to get everyone out the door and Matt was…trying. We split the kids up. Matt stayed with H and would bring him to the parade once he settled. I drove G to her team and staked out a spot to watch.

Minutes turned into an hour. G passed by with her team, smiling and waving and adorable. Still no Matt. And no answer to my text messages, either. The rain came down harder. G’s team and half the town gathered on the field for ice cream. I tried to keep my panic down to an ordinary level, didn’t let my mind go into full on freaking out mode. And then a text from Matt: In car.

Finally. Relief.

But more time passed and no Matt, no H. He called me or I called him and he told me he hadn’t been able to figure out how to get the car out of the garage and they weren’t coming. And another bottom dropped out.

It was after this phone call that I walked away from the crowd because there was not enough air to breathe in the wide open, rain soaked field, not with a chest full of fear and mom guilt and wild, unrestrained panic.

We all got home safe, dried off, and probably should have called it a day. But, we didn’t. We (and really mostly me) needed normal. Needed to find a way to prove that everything was still fine. Because not only were we chasing a cure, I was chasing normal. So, we went out.

One of the couples we were going out with offered to drive us (thank goodness because Matt should not be driving anymore). We made small talk in the car. I could hear how off Matt sounded and how hard he was trying to sound okay. I don’t know if the other couple noticed, I have to imagine they did, but they continued to include him in the conversation like nothing was wrong. Then we got to the restaurant and had a drink standing around the bar. Matt chatted and laughed with the other guys, and didn’t notice when his right arm started drooping and his drink started spilling onto a good friend who was gracious enough to laugh the incident away. We sat at dinner. Matt ordered, but then couldn’t remember what he’d ordered. And when the food came, he struggled to hold his knife. It was hard to watch and even harder to ignore.

During dinner, one of our friends turned to me, seeing Matt’s struggle, probably seeing my distress, and said something along the lines of: don’t worry, we (the three couples we were out with) got this, you can take the night off. I couldn’t and didn’t take the night off, obviously, but we made it through the night and managed to have enough fun to scrub out the stain of the morning.

Remember when I talked about help I couldn’t repay because it would take lifetimes? Well, that help manifested in a million different ways, and sometimes it was there, in something as simple and impossible as chasing normal right alongside me.

So April 22, was not easy, and reliving the darkest days is and will be as gut wrenching as I thought it would be, but I’m grateful to find, that even in the darkest times, there was light and kindness, and always hope.

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April 21, 2017: Is This Normal?

Around April 21, 2017, I was getting a taste of the life Matt had previously shielded me from. Because starting around then, I became the one who called and emailed the clinical trial nurse at Duke, usually with an edge of panic to my voice I hoped they wouldn’t notice because I didn’t want to seem irrational—no crazy wife here. The assumption being, of course, that if I sounded too frantic or too emotional they’d dismiss my concerns.

The message from Duke hadn’t changed: we had nothing to be worried about. Of course there’d be some symptoms—the tumor hadn’t been removed—and swelling is normal after the polio procedure. Okay, true, and we’d been warned about the tumor’s proximity to the language center, but—is this normal?

One year ago today, only one question burned through our nights and we pinned all our faith on the answer: Is this normal? If the average timeframe for swelling related symptoms is six months, why are we seeing symptoms crop up at only three weeks out?

The official answer was: sure, everyone reacts differently. Which is an insanely infuriating answer. At least I think so. It felt and feels dismissive and the subtext, in my mind, was: it’s an experimental trial and sixty-something people have gone through this procedure, there isn’t enough of a sample size to define normal, so sure, anything is normal.

Wait for the MRI in less than two weeks and don’t worry, they said.

But, it’s easy to say don’t worry from thousands of miles away. It’s less easy to say it’s all normal when your daughter wakes up in the morning and proudly tells you she finished reading the bedtime book last night because her daddy couldn’t. It’s not so easy to wait two weeks when everyday brings a new nightmare and you feel as if you’re walking a tightrope without a safety net below.

Worried was out the window. We were terrified. And I do mean we. Because as awful as it was for me to watch Matt deteriorate, it was unimaginably more horrifying for Matt to see himself deteriorating, to realize his brain was betraying him at every turn and an act as simple as reading was now a challenge.

And yet, it didn’t slow him or us down. Thanks to modern technology, I can re-trace all our steps from April 21, 2017 and see that the frame of our normal life was there. I know which exercise class I went to, what Matt was working on at the office, and where we went to eat for dinner. If I wrote a story from that, it would seem as if we really did have nothing to worry about, everything was moving along as it should and what were we freaking out about. But nothing was normal, not our life, and not Matt’s reaction to the polio, and all we wanted was a straight answer to the seemingly simple question: is this normal?

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My text message to a friend about my latest phone call with Duke.