April 20, 2017: Props

On April 20, 2017, I texted Matt a question in the middle of his work day: How would you feel about a real tea kettle versus the electric kind. (Really riveting material today.) It’s not particularly relevant to our story, which I’ll get to, but it’s interesting to read in light of today, the one week anniversary of going public with this blog.

Because a year ago today, I didn’t want to choose a tea kettle without talking to Matt first. You could blame it on social dynamics or ingrained traditional gender roles, but anyone who knew Matt and knows me would understand. Matt was the researcher. He’d read reviews and compare products, be meticulous and thorough; it would take two hours and all my patience. But we’d have a good tea kettle. Left to my own devices, it wouldn’t occur to me to read a review until after I got home, used the tea kettle, and realized I’d bought…something less than quality.

So it’s not so surprising that grief hits me hardest when it’s time to make a decision. Any decision, small (should I let H get a pet lizard) or large (should I let the entire world in on our story). It’s in those moments, pen in hand hovering over a paper waiting for my signature, when the tears sting the backs of my eyes and I just want to stop time and reassess reality. Because it’s been 76 days and I still feel like somebody made a mistake. Not in a the-world-is-so-unfair-way, although that, too, but in a way I can’t articulate yet because it cannot be understood without experiencing everything that came before.

So, back to April, to a date which felt scary and stressful and heavy at the time.

On April 20, 2017, Matt left work at a reasonable 5:30 and took a walk around the neighborhood, staying active just like the doctor ordered. Following doctor’s orders—checking in with the clinical trial nurse, taking medicine exactly on time—was all we could do while the days were snowballing. The subtle slips and mishaps I’d noticed the day before and the day before that were becoming more frequent and more obvious, especially at night. Screenshots of text messages can only capture the typos, not the moments sitting at the top of the stairs listening to Matt struggle with words in a picture book he was reading to the kids, wanting to step in but not wanting to hurt his feelings, or the difficulty of trying to make a decision with someone who couldn’t quite follow the threads of the conversation. Those moments are ingrained in my memory alone.

I have a post-it note on my computer that I put there as a reminder for when I write. It’s in all caps and says: don’t forget to use settings and props. It was a tip I’d read somewhere and the purpose, I think, is to anchor the reader in the reality you, as the writer, are creating. Looking back, that’s what the tea kettle text was meant to do. A prop for our story, an anchor to stabilize us in a reality that was spinning out of control, a way to cling to hope.

Author’s note: I did choose our tea kettle (without reading reviews…it works fine), and I also chose our dishwasher (overcompensated by reading too many reviews and then got talked into buying something else anyway), and I did start this blog, obviously (but not without a fair amount of panic that Matt wasn’t there to tell me if it was the right thing to do).

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April 19, 2017: Maybe It’s Me?

On April 19, 2017, I forgot to bring G’s glove to softball and showed up with the wrong kind of helmet. I said “half and a half” in a text message to Matt instead of “hour and a half”. Chances are I forgot to buy half my grocery list at the supermarket that day, too.

It’s a funny thing to remember sending a text message a year ago. And I don’t remember. Not in any real way, anyway. I don’t remember what H was sick with or whether the fever he came home with broke in a few hours or a few days. But I remember re-reading my text message after Matt responded (with his one word answer) and seeing my typo. My typo. A word mixup, which looked nearly identical to some of Matt’s typos over the last few days.

There I’d been, studying and worrying and overanalyzing Matt for mixing up words and sending typos in text messages, and I’d just done the exact same thing. For each instance of Matt saying cold when he meant hot or up when he meant down or attempting to use the rounded back of a spoon to scoop oatmeal, I’d have two —or three or seventeen—episodes of less than perfect brain function. (I forgot to bring a glove to a softball game for goodness sake!) How could I note and dissect every single one of Matt’s missteps, when I was having just as many of my own, if not more? And worse, how could I criticize and obsess over his mistakes when I was the only one who saw them?

People who ran into Matt would frequently comment to me on how good he looked or how great he seemed. When we were on an upswing, I agreed whole heartedly. (Yep, he’s doing awesome. See, never anything to worry about.) But when we were at the beginning of a downturn, or nearing the bottom of one in this case, all I could do was grit my teeth, nod, and collapse into a storm of self-doubt and uncertainty. I hated myself for not agreeing, scolded myself for being overly critical, and told myself to stop imagining problems. But I couldn’t stop seeing the mixups and the mistakes and the miscalculations, and I couldn’t simply wave them off as being the kind of mistakes we’re all guilty of making, no matter how much I wanted to. Why? Why couldn’t I focus on the fact that he was doing great at work and coming home to read to the kids? Just agree with everyone else and move on? I don’t know.

Now that I’ve had the honor of connecting with other brain cancer caregivers (thanks to this blog) I’ve learned that I wasn’t alone in this particular experience, in succumbing to self-doubt. But back then, on April 19, 2017, I didn’t have the benefit of this connection. I knew my world felt tilted just enough off center, that something wasn’t quite right, and I thought it was Matt, but if no one else agreed, then…maybe it was me? Just me, imagining problems and creating drama for no reason. And after a while, it becomes hard to trust your own instincts, to believe what’s in front of you because it’s become second nature to doubt yourself. I did eventually trust my instincts when it came to Matt, but it took me a very long time, possibly too long.

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April 18, 2017: Small World

I’m sitting here, trying to write about April 18, 2017, which was actually a funny, it’s-a-small-world kind of day, but I drove down a street last night that I hadn’t been on since January 23rd, and now my brain keeps skipping ahead to the worst days, to the days when I walked out of hospital rooms and thought I wasn’t strong enough to do this anymore and then somehow did it anyway. Some people have called that strength or bravery. I’m not being humble when I say it’s not that. It’s something much less praiseworthy, more akin to need and survival and plain old denial. After all, a drowning person isn’t brave for kicking to reach the surface; they’re just desperate to breathe.

When Matt was first diagnosed, we went to two different hospitals and saw two different neuro-oncologists to get opinions on treatment. The first doctor at Hackensack told him he’d be fine. (Sounds good! Sign us up!) The second doctor at Sloan walked in with a grim look on his face and told us Matt had eighteen months left and we should start making preparations. (Wait, what?) Obviously, we went with Hackensack. But those hours after the Sloan appointment, when we sat on the playroom rug relaying that impossible prognosis to Matt’s parents, were sobering in a way that could have changed our entire journey.

The key there is could have. If we’d started our journey thinking we only had eighteen months, what would we have done differently? Would we have still chased a cure and operated on the belief that things would turn out fine? Who knows, of course, but I think the answer is yes. Because after the Sloan appointment I told Matt it would be okay because I would will him to be okay. As if the strength of my will alone would fix this terrible thing. I completely believed I could cure his brain cancer by wanting it enough. Now, while Matt truly believed in me in many ways (he’s the one who encouraged me to start writing after H was born*), I don’t think he thought my will alone would cure him. (Wild guess.) But he did believe he would be cured. Simply, with a grace and a faith that never wavered. He believed it even after I’d stopped believing it.

My will alone didn’t fix Matt. I have a full year of blog posts to go into all the mistakes I made and all the decisions I regret, but I don’t regret thinking I could will him better. It’s what kept me believing, right alongside Matt, with all my heart and soul that our story would have a happy ending—and that’s how we made it through the days .

So, back to April 18, 2017 and my (not-so-funny anymore) story. I went to see an allergist for my out-of-control Spring allergies (because those trees were budding early, remember?) and the doctor turned out to be my neighbor. Small world. We talked itchy eyes and sneezing. I’d had no idea he was an allergist and he had no idea the battle that Matt and I were waging across the street from him. And he continued not knowing until after we’d lost. Because how do you casually mention a nightmare? How do you bring up in normal conversation days so unspeakably hard you feel broken by the time you climb into bed? You can’t and you don’t, not if you’re willing them away.

*I found the email that proves this statement. Matt’s one request was that I make the dark, mysterious, handsome character based on him.

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Fun fact: Our dog goes nuts at the sight of their dog.

April 17, 2017: Blaming Brain Cancer

If I showed a doctor our text message conversation  from April 17, 2017, about whether Matt was going to paddle tennis with a few guys, they’d see a typo. Matt wrote they instead of that, so what? The doctors couldn’t see what I saw when I read that response. Without the benefit of thirteen years of exchanging text messages (about 500 a month!) and emailing daily, his answer would seem perfectly fine. But, that text message was everything that was going wrong.

First, Matt loved tennis. He never passed up an opportunity to play. When we moved to our first house, and neither of us knew a soul in a thirty mile radius, he found a stranger to play with via some tennis matchmaker website. The only thing that could tear him away from a tennis match was a fantasy sports draft. So the fact that he wasn’t definite about going was alarming.

Second, Matt was really social. He loved going out, being out, talking to people. Even if he wasn’t in the mood to play, he’d probably go just to hang with the guys.

Then again, it’s easy for me to always blame brain cancer.

I really do wish I could tell, when I compare emails from 2009 or 2012 with those from 2017, whether the differences I note were caused by brain cancer (and brain surgery and medication) or whether those slight shifts were due simply to that fact that Matt had two kids, a mortgage, a terminal cancer diagnosis, and a wife that wouldn’t stop asking if he was okay. (Fun fact: I can and do get more annoying during each downward spiral, so much so that the kids started calling my litany of questions the daily checklist…but that’s still a few months away.)

Would Matt still have been over tennis and socializing even without the cancer diagnosis? I think that’s the hard part of brain cancer, for the patient and for the caregiver. It’s impossible to separate the person from the disease. What was Matt and what was tumor? But maybe that’s true always and you can never separate a person from their circumstances and any attempt to try is wasted energy.

When I started this project, I didn’t know how widely I’d share it, if I would share it at all. A lot more people are following me along this journey than I’d expected, and I’ve panicked and second guessed myself half a million times. But, then I think to the day I decided to share. I ran into a woman who had a family member recently diagnosed with GBM. I offered her doctors’ names and numbers. She didn’t need them. What she wanted was to hear Matt’s story. Just his story. And that was all I’d wanted when we were in the thick of treatments. To hear someone else’s story. To know we weren’t alone on this speeding train with an invisible monster we couldn’t understand.

I still don’t know how to explain the unique challenges that come with brain cancer in a way that does justice to the experience. All I can do is show snippets of daily life, explain how a text message could send every nerve in my body into high alert, and describe how I pinned my hopes on that May 1st MRI.

 

Text talking about whether Matt would go to paddle tennis.

April 16, 2017: Plummeting

We’d been on a downward spiral for at least a few days by April 16, 2017, but up until then Matt had been able to rally. Just the day before we’d gone not only to a 104th birthday celebration in the afternoon but also to a 40th birthday dinner.

But the next day, Matt couldn’t rally. He had a headache. And we started to plummet.

He had a headache, like he so often did after a Saturday night out. And many Sunday mornings I’d find him nursing a hangover outside in the cool air or pacing the living room or popping Advil like Tic Tacs. But the odd thing was, a lot of the time, he hadn’t more than a drink or two at dinner. It became kind of a joke about him being a lightweight.

I remember reading an article, just after Matt was diagnosed, about Edgar Allan Poe. I have no idea what I was searching to come across this article, and clearly I’d fallen into some Internet rabbit hole during those first sleepless nights, but nevertheless, the article struck a chord in my mind. It mentioned that Poe was notoriously bad at holding his alcohol; he was, by all accounts, a lightweight. Then it went on to list the possible causes of his mysterious death. One theory was brain tumor. Which got me thinking and making wild, sleep-deprived logical leaps: what if every Sunday morning “hangover” had been an early symptom I’d missed?

Although, if I’d been looking for symptoms and signs that something was wrong, I didn’t need an obscure article from the bottom of the Internet. I didn’t have to look past the Advil bottles. Not a typo. Bottles. A handful of them. Travel size. Industrial size. Whatever’s in between size. Completely or nearly empty. Months and months worth of Advil. It was only when I went to pack Matt clothes to wear in the hospital (this is before the time when I kept a hospital bag packed by the door for quick grabs), that the truth of those bottles hit. How could I be blind to something so obvious?

On April 16, Matt woke up on another Sunday morning with a headache. This time there was no joking about unearned hangovers. We were supposed to take the kids to my aunt’s house. Matt was in too much pain, but he didn’t want to spoil the day for G and H who’d been looking forward to seeing their cousins. He insisted that I take them, that they shouldn’t miss anything because of him. Need assessment, right? I called Matt’s parents who were on their way home from the city; they’d come right over. Matt would only be home by himself thirty minutes and he promised he’d sleep the entire time.

He did sleep and I don’t think I breathed for the entire thirty minutes Matt was alone. It was the first time I’d realized Matt’s condition was bad enough that I was worried about leaving him alone. That fast the descent to the bottom picked up speed. But that’s brain cancer. The Advil bottles pile up, the symptoms creep in, the declines are slow and subtle until they aren’t. But the upswings, when they come, (and I promise one is coming soon) are lightning fast and capable of leaving you stunned, dizzy with the effort to catch up and fully whiplashed.

April 15, 2017: The Theory of Time

On April 15, 2017, we celebrated Matt’s grandfather’s 104th birthday. Yesterday, we celebrated his grandfather’s 105th birthday. In the same room. With (nearly) the same small group of people. But this time, the man of the hour sat by the wall, not in front of the window. This time, there was strawberry shortcake instead of an ice cream cake. And this time, we didn’t try to take a picture of four generations.

I know that in going through the year I’ll come across days that are wildly difficult to revisit. I suspect there will be many days that are just plain boring. I hope I’ll find a few days that are a little fun. But I didn’t consider that there’d be days when I’d be in the same place on the same(ish) date. That it would feel as if I was stepping back into 2017, proving that theory about time being nothing but an illusion.

I could almost see us, Matt and me, in that room a year ago, mingling and eating and wrangling H to stop being a punk and just take a picture already. I could see us pretending we weren’t terrified by the subtle changes that grew less subtle everyday. Duke wasn’t concerned, so neither were we. Or at least that’s how we operated. Because we’d had a tough morning. I don’t even remember why, probably Matt was frustrated (struggling to read, write, and speak could do that to a person) and I was anxious (watching your husband struggle to read, write, and speak could do that to a person) and the stars aligned so that the combination clashed. I remember we were late and both crackling with tension, even as we mingled and ate and wrangled, and pretended that we weren’t on a train with no brakes, hurtling full speed toward…something.

The kids ask me often how it could be that their great-grandfather is 105 but their daddy, who was younger, isn’t alive anymore. Obviously, I don’t know, and while I stumble over some words that I hope will at least not make them feel any worse than they do, they ask another question along the theme of dying too young: but a kid can’t get cancer, right? They’ve asked me now a few times. With every breath in my body, I want to lie to them, preserve whatever innocence they have left. Last year on April 15, I probably would have lied. But they’ve been through too much and they are aware of too much and I owe them truths now. I add though, this other truth: doctors are making advances everyday, and kids are resilient and strong and remarkable.

All this is to say, I stepped back into 2017 yesterday—not anxious or crackling, no longer feeling like I was hurtling forward. A little (a lot) less innocent, a little more truthful, still kinda late, and still not completely hopeless.

Four generations

April 14, 2017: Apple, penny, and…

By 6:27 on April 14, 2017, Matt was on a plane heading to Duke. Yes, he’d eaten (a ton, in his words) and yes, he’d forgotten to take his Dex but he had it with him and would take it right away.

By 8:12, he’d landed. H hadn’t even woken up for school yet. Bloodwork and labs were done by 9:08. First nurse’s visit checked off the list by 10:05.

And then, another nurse came in to see Matt, to test him, and at 11:18, the bottom dropped out from our universe. Again.

I have a few dozen text messages I could share from this day. A play-by-play of Matt’s day, from morning through afternoon, including what he ate and where. There are text messages from him to his whole family reporting on the two appointments, after the first, triumphant, after the second, defeated. There are side texts between him and various family members. And then there’s a frantic one from me at 11:20 (Can you call me!!????) and I moved the conversation off text because what he’d texted was too heavy to type.

The second appointment had not gone well.

Let me backup a bit. At each appointment, Matt was put through a series of physical and mental tests. The tests changed, evolving, or devolving I guess, based on his condition, but the general outline of the tests remained the same no matter which nurse or doctor administered the test. They examined his balance, his strength on each side and in each limb, and his sensation. Then, they moved on to his mind and tested his memory and cognition and focus.

One of the memory tests asked him to repeat a grocery list of about a dozen items. I would always laugh with whoever administered the test because I spend my life forgetting something on my grocery list. He also had to remember three words (usually some version of apple, penny, and table) which he’d then be asked at the end of the exam. At every appointment, I’d silently take the tests with him, as if I could telepathically communicate the answers to him, and breath a sigh of relief when we both got the answers correct. We were fine. He was fine. Everything was fine.

But on April 14, 2017, Matt couldn’t remember one of the three words. And he didn’t do well on the simple math questions. And the crazy part is…no one in the medical world was that concerned.

What?? Here was actual, concrete proof that something was wrong. A test Matt had passed with flying colors before, now was a struggle. Be concerned! Call in everybody! I thought him missing a few questions was the most awful thing I’d heard (clearly, since I used both question marks and exclamation points in my text). My husband, who could summon up from the depths of his memory every sport statistic for every sport ever, who did math so quickly in his head that he put my AP calculus background to shame, hadn’t done perfectly. I wanted the doctors to do something, now.

They would, eventually, and the truth is, there was nothing anyone could do at that moment. But also, I would learn that missing a few words and struggling with a little math actually wasn’t that concerning. Because his answers to the tests would and could get a lot worse, and the questions would and could get a lot simpler.

Matt’s text to the family describing the appointment. 

April 13, 2017: Words and numbers

I wish there was a screen shot of a text message or an email to describe the conversation Matt and I had on the night of April 13, 2017. There isn’t. Our conversation over text revolved, again, around those blinds for the bathroom. (I know, how much can one couple discuss a bathroom window?!) There is no photographic evidence either of what we talked about. (More pictures related to the blinds!) So, that leaves me with my own imperfect memory of a day and a night and a conversation that revealed the crumbling foundation of our quest for the cure.

Matt was scheduled to fly to Duke, alone, for another check-in with the nurse and more blood work the next day. It should have been an easy appointment. Only two weeks had passed since the polio infusion and nobody expected to see anything (swelling or results or otherwise) yet. This appointment was meant to check boxes for the protocol.

But…we did see something.

What we saw was subtle, because things with the brain are always subtle. Mixing up two words here. Saying the wrong number there. Little things. All mistakes I probably make all day long. But here’s how the thought process works when your husband has a brain tumor and an experimental virus floating around in his head: Is he mixing up more words than than usual? Am I being too critical? Did he always make so many mistakes in typing a text? Maybe I should stop overanalyzing?

Ultimately, it was Matt who confirmed there was something to notice. He came home after work and said something had happened at a meeting. He’d been talking and couldn’t get his mouth to say what was in his mind; he couldn’t recognize the numbers on the page. It had been a fleeting episode, but it had shaken him up.

We stood around the kitchen island where most of our important conversations seemed to happen and he told me what happened. With a straight face and straightforward language. He didn’t play it down. He didn’t crack a joke. He didn’t try and soften the truth. That’s how I know it had scared him.

I can’t imagine how he must have felt during that episode or afterward having to come home and tell me. His brain had betrayed him in a way he could recognize. This was more than a shift in his personality. But, luckily, he was heading to Duke tomorrow and we would get some answers. Right?

A typo or something more? 

April 12, 2017: Amazing Brain

Re-reading the posts from the last two days I realize I contradicted myself. One day I’m writing about how Matt’s humor and personality were under assault and the next how he could joke with his sister and crack us all up around the dinner table. Both stories couldn’t be true, right?

They could, if the person diagnosed with brain cancer has an “amazing brain.”

Amazing brain is a direct quote from the neurosurgeon who performed Matt’s first brain surgery on June 8, 2016. He’d never seen someone with such a huge tumor functioning at such a high level. Another theme of our year.

On the day I drove Matt to the ER, that first day before we’d ever heard the word glioblastoma, Matt was falling apart. In pain and lying on the stretcher barely able to speak to me. That is, until a doctor walked into the room. When that happened, Matt perked right up, shook hands, cracked a few jokes, and played down my concerns. When the doctor left, Matt slumped back onto the bed, tucked his head into his hands, and disappeared. I paced. I nagged. I compared him to the old cartoon of the limp frog that came alive when no one but its owner was in the room and probably accused him of overreacting. I was too scared to be the patient, compassionate wife and I couldn’t have guessed the world we were about to enter.

Matt’s amazing brain defied expectations and surprised the doctors at every turn. Without getting too ahead of my self-imposed timeline, I can reveal that his extraordinary ability to push back the tumor and overcome his symptoms in front of others, doctors particularly, remained intact throughout his treatment. It was an ability that turned out to be a blessing and a curse because we didn’t realize how bad things had gotten until too late. But, even an amazing brain could not push back the tumor all the time, and Matt would often fall apart, like he did that first day, when it was just the two of us. It meant that a lot of times I got the worst of him because he had nothing left to give at the end of the day; he couldn’t beat back the symptoms. I’d like to think Matt knew he could fall apart in front of me, even if I paced and nagged, because he knew we were unbreakable.

On April 12, 2017, Matt and I emailed about window blinds. We texted about an electrical issue. Minutiae. The joys of home ownership. The issues you think about to keep your mind off the fact that things seem to be getting worse instead of better.

The height of domestic excitement right here

April 11, 2017: Oranges on the Seder plate

On April 11, 2017, Matt’s sister put an orange on the Seder plate and announced that it stood for women’s rights. This was all Matt needed. I don’t remember the exact conversation. I’m sure he teased her in the way only a big brother could. I’m sure we all laughed, his sister included. I’m sure, though I don’t remember, because that was Matt.

The other day the kids and I toured a peer support bereavement group. At the orientation the woman who showed us around asked them what they remembered about their dad. I braced myself for the worst because their last memories were not joyful. But kids are resilient and I am reminded every day of their remarkable ability to keep moving because they did not mention any of the difficult days. They talked about how he played basketball and superheroes with them. They reached back in their memories to the real Matt and I am so, so grateful that they’ve let the hard days disappear, and all that’s left is the fun.

I often wonder what the kids will remember about Matt. They will never know him as an adult. They won’t know his sense of humor, the way he liked to argue the contrary position (of anything and everything) just to get the other person riled up, or how sometimes he made jokes so bad that the only response was to roll your eyes and grin. They won’t know the infuriating way he referred to all male doctors by their last names and female doctors by their first names, or how he could laugh at himself when I pointed out (over and over and over again) that inequality.

It’s sad to think that G and H won’t know that part of him because it’s the part I fell in love with first and the part I miss the most. But hopefully one day they’ll read this post and a spark of memory will ignite, and maybe they won’t remember how Matt teased his sister about the orange on the Seder plate, but they’ll remember us all laughing about it together.

H trying out the new dog crate they built together.