June 30, 2017: Flashback #15…Hope In Gun Metal Gray

Two days ago, I wrote that my records from 2016 become scarce. I told the story of how Matt ended up in the standard of care treatment arm of a clinical trial for unmethylated patients. I called that story part one of wrapping up 2016.

Part two of the story from 2016 finished about two years ago today. Matt and I took the kids to the town’s 4th of July carnival, I decided not to look for a child therapist for G and H (because Matt was back to work, off the Dex, and back to himself), and Duke reviewed the MRI. In my memory, when the phone rang, Matt and I were again sitting outside on the deck after the kids had gone to bed. In my memory, the phone call again lasted a few breathless minutes. That well-known doctor with the poor bedside manner told us what Hackensack and Morristown and Sloan had already told us based on the original, post-surgery MRI: the surgery was well-done.

Matt explained that he wanted something more than the standard of care treatment and asked if Duke had anything to offer. The well-known doctor who ordered the second post-surgery MRI because the first was too blurry for him, the one whose office didn’t help us get access to a MRI, whose request had sent us into a tailspin of stress and delays, told us that at this point, it was too late for Matt to start the process of enrolling in a clinical trial at Duke. The time it would take to travel to North Carolina, complete the necessary lab work, and sign all the paperwork, meant that Matt wouldn’t start treatment within the suggested timeframe. We understood that to mean a delay in starting treatment would be more dangerous than a clinical trial might be beneficial.

That second MRI that had taken over a week to procure added nothing to the conversation. And now we were too late.

(The feeling here: anger, frustration, and the sense that someone was playing mind games with us.)

We were left with a single option: the standard of care treatment at Hackensack.

Not just a single option, but the single option that offered the least hope. I remember hanging up the phone, the disappointment a palpable energy pulsing between us, and saying it would still be okay. Maybe standard of care didn’t work for other unmethylated brain tumors, but we’d find a way to make it work for him. I remember thinking if the treatment on its own was insufficient, I would green juice, and supplement, and will him into perfect (or at least, cancer free) health.

If the medical world wouldn’t give us the hope we wanted, we’d make our own.

And we did. We created so much hope that one year ago today, Matt signed a three-year lease for his next car. Brand new to the showroom, hot off the assembly line, sleek and streamlined in gun metal gray.

I’ve said often (too often?) that I read the text messages and emails and I search between the lines for the hope. I rely on my imperfect memory to help me go back in time and extract the hopeful thoughts pushing us forward. I very rarely find hope as tangible as I do in the memory of a year ago today. We were three days away from the first post-poliovirus, post-Avastin MRI and we never, not once, questioned whether Matt should sign a three year contract.

Not once.

That’s not reading between the lines. That’s hope, manifested in action, in deed, in real life.

Matt drove that car for only six weeks. Even after he was unable to drive, he never entertained the idea of surrendering the lease. He remained sure, until the very end, that he’d recover, that he’d drive his car again.

That car was a symbol of his hope, manifested in gun metal gray.

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We were late to the Bitmoji world, but we made up for it by using them ALL the time.

June 29, 2017: Forever Home

One year ago today, the pool timer broke, the air condition fizzled out, and our living room furniture was delivered. That seems like a small thing at first. That the furniture was delivered a year ago today is insignificant at best. That homeownership proved once again to be a bad investment is undoubtedly irrelevant to the story. And when I read our text conversation and looked through the pictures of one year ago today, I glanced over the messages Matt and I exchanged on these topics. But I came back to them. Maybe because I don’t have much to say about the day, which is likely true because we were at a standstill (counting down until July 3rd in 2017, waiting for Duke to call in 2016) but maybe also the story of the day is the furniture. The couch and table and chairs we bought to replace the fifteen-year-old furniture that had traveled to New Jersey with us from our first one bedroom apartment in the city. Maybe the story of today is simply that on June 29, 2017, we completed our forever home.

When Matt and I first started dating, he told me he knew his destiny. When he was born, someone had foretold his future based on his Zodiac sign and the alignment of the stars. He told me he was destined to live in a cabin in the woods, and that the woman he loved would begrudgingly live there with him, for him. I have a feeling his memory of the exact wording adapted to suit his needs over the years. I have a feeling my memory has similarly adapted. But I do remember often telling Matt that if I was, in fact, the woman in the prediction, there was no chance I’d live in a cabin in the woods, even begrudgingly. He’d laugh and tell me I’d love it.

As it turned out, we did live in a cabin in the woods, if I define cabin and woods in the loosest way possible.

We bought a house when I was pregnant with G. Matt admitted he’d had buyer’s remorse from the moment the ink dried on the mortgage. The house was too far from any highways, too isolated. We’d gone from living in bustling Union Square, steps away from a Duane Reade, a Farmer’s Market, and a Tasti-D-Lite, to living in a house nestled against a forest. Our very own cabin in the woods. Destiny foretold. And neither of us was happy.

About a year after buying that house, we were ready for a change. I wish I could say we put more time and thought into buying a second house. But we didn’t. I said in a post back in April that our relationship was marked by speed, snap decisions and a feeling that we always had to rush to the next stage.

It was fate that led us to our true forever house. It was Matt sitting in traffic by the same exit every night on his drive home, calling to tell me if we lived in this town, he’d be home by now. (Like a walking billboard.) It was deciding to make an unscheduled stop at an open house minutes before the realtor left. It was that breath stealing excitement we both felt when we walked in and knew we were home.

Once the ink dried on the mortgage, I told Matt I was never moving again, not even if we won the lotto. I told him we’d done the cabin in the woods, we’d fulfilled his destiny, so now we could check off that box on his fortune.

I could take the story of this day to a dark place. I could write about how the quick progression of Matt’s illness meant we never finished hanging our wedding portraits, which remain stacked in the closet where the painters left them. I could write about how I never knew if I’d wake up to a good day or a bad day for Matt so we stopped inviting company over to see the new furniture.

In post-hope, dipping into that dark place can be too easy. It’s a fact of our new reality I see too often reflected in G, who, regardless of the fun she’s having, never strays far from the harsh truth that her daddy should be there and he’s not. There’s not much to say when she dips into that dark place. I can hold her hand, but I can’t guide her out, even though I’d give everything to do so. The best I can do is acknowledge and validate every word she utters, be honest about my dark places and how I try to find ways out, and hope that’s enough.

Because I’m learning, sometimes the story has to go dark to be honest, to be acknowledged and validated. Sometimes the story has to go dark so you can learn to find the light again.

Dipping into that dark place is, maybe, necessary to recover. But, sometimes, finding a way to skip the dark part means the chance to remember the simple magic of walking into an empty house and knowing you’re home.

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Forever home. Forever furniture. 

June 28, 2017: Flashback #14…Wrapping up 2016

On June 28, 2017 our story is flat. We were on hold. Waiting for a flight to Duke and a MRI that surprised everyone. In advance of that MRI the doctor at Columbia wrote, “Given how good you are doing from a neurological perspective, I imagine it will be good….” (That amazing brain, again.)

A year ago today, I asked Matt whether he thought I should send my resume to a company looking to hire a part-time editor. He told me to do it. By the time I got the call for an interview, our world had flipped. I turned down the chance. Not relevant to today’s story in 2017, wildly relevant to post-hope.

On June 28, 2016, we had an 11:00 a.m. appointment at Hackensack and we set the date to start radiation. At Hackensack. Not at Morristown, where the radiation oncologist who I’d cast as the villain in our story worked and destroyed the hopes of her patients. Aside from that, I searched through the text messages and emails and photos and I could not figure out what we talked about during this appointment.

The methylation status was yet unknown. We could not sign up for a clinical trial without knowing whether Matt’s tumor was methylated or not. We could not move forward with Duke because Matt hadn’t even had his MRI appointment yet. I have no idea what we covered in the appointment. I can guess at how we felt—frustrated, anxious, a little desperate to act—but I don’t know for sure.

And after tomorrow, my records from 2016 become scarce. I don’t know the date we found out Matt’s methylation status. I don’t know when exactly Matt learned which trial arm he’d been sorted into. So I can guess at the dates, or I can start wrapping up the 2016 story and turn the focus back to 2017, back to the impact of a clinical trial only 60 other people received.

So, part 1 of wrapping up 2016: Shortly after this date two years ago, we learned Matt’s tumor was unmethylated. His tumor would not respond well to the standard of care treatment (Temodar + radiation). Because of his methylation status, he was disqualified from the trial we’d been aiming for, the one that combined the standard of care and Nivolumab. My memory fails me and I’m not sure if we were left with only one trial at Hackensack, or if we were steered toward only one trial at Hackensack. The trial Matt enrolled in, specific for unmethylated brain tumor patients, compared patients who received only the standard of care (Temodar + radiation) with patients who received radiation + Nivolumab. Patients were randomly sorted into one of these two arms. Matt was sorted into the arm that received only the standard of care.

I do remember the way my stomach dropped when we learned that Matt was sorted into the trial arm that received (only) the standard of care. I remember it so clearly because I was furious. For weeks—weeks!—the idea that unmethylated tumors do not respond to the standard of care treatment (particularly Temodar) had been drilled into our heads. It was the single, unequivocal fact we’d been told over and over. And suddenly, despite every attempt to get anything other than the standard of care, we were left with no other options.

A part of me thinks that even the doctors at Hackensack were blindsided by Matt’s methylation status. His amazing brain lulled them into the belief that he’d have all the best genetic markers. They backpedaled on their earlier commentary. They told us standard of care might be good for Matt, despite his methylation status, because he was young and healthy. They told us the standard of care still held promise for Matt.

His tumor came back within 8 months. The standard of care failed him miserably. And I think this might be one of the hardest parts of the story to come to terms with. Matt wanted a clinical trial drug, we fought for a drug with hope and promise, but because of rules and red tape and regulations, Matt was barred from receiving a drug that might have helped.

Only might have.

It was always a gamble.

When we were presented with the option of the poliovirus clinical trial, we knew that it was a gamble, too. We aimed for the highest possible prize along with 60 other people. We shot for the miracle.

When I re-read this post, I tried to decide if I was still angry that we were sorted into the standard of care arm of the clinical trial. That’s something I do often—check in with whether I’ve hit the anger portion of the stages of grief. I don’t think I have. (Or I’m in denial. One or the other.) But what I do know is I can’t be angry at us for shooting for the miracle and aiming for the highest prize and believing with all our hearts that we had a chance.

So not angry. Sad, obviously. But also…overwhelmed with love for that young hopeful couple we were, that kept going and believing.

June 27, 2017: Perched on the Edge

One year ago today, Matt texted me a headshot for his LinkedIn profile and explained that he needed to update his current picture with one that shows him bald. He added a sad face—which I think was more for show than because he was truly upset. (Hair loss will get its own post at some point.) We joked about LinkedIn, chatted about dinner, and remained blissfully unaware that we were perched on the edge of our upswing. That we had six days left of waking up without that weight on our lungs. That after we fell from the edge of this upswing, we’d never quite recover.

Two years ago today, for reasons I can’t remember, insurance would not approve a MRI for Matt based on the prescription we had. Without a prescription, the radiology center would not let Matt keep his appointment. Somehow, all the forward progress we’d made had vanished within minutes and we were back to the very first step. This time, we didn’t bother with Duke or Hackensack. We turned to the neurosurgeon, who finally agreed to write the prescription and submit it to insurance for us. By 2:24 p.m., we had no prescription and no pre-approval. When Matt called to check in, the assistant at the neurosurgeon’s office said there were six names in front of us who needed MRIs scheduled and approved, and she couldn’t guarantee she’d get to Matt today. Stressful, because we were three weeks out from surgery; the time to settle on a treatment was quickly disappearing.

But because Matt was Matt, because at his best he could always talk himself into the front of the line (which was one of my very favorite things about him, particularly at the airport), he ended the day with a prescription and pre-approval. He texted that he was anxious to get started soon with somewhere. On June 27, 2016, we were perched at the very edge of the battle, days away from officially starting treatment.

The story has not been difficult to find over the last few days—we were in the trenches of our battle both in 2016 and 2017—but it’s been difficult to write. I’ve been struggling to feel connected to the version of ourselves we were back then, because I know what happens next. I know the blow about to hit the 2016 version of Matt and Elaine. I know the painful plummet waiting for the 2017 version of Matt and Elaine. And I’ve been acutely aware—unable to escape the truth—that in 2018, Matt and Elaine exists only in memory.

Meaning, I’ve been perched on the edge of a grief wave for days. For the last week or so I’ve been writing about the lake party, kindergarten graduation, the first day of camp, while living these events in the present. Last week, G, H, and I went to the end of the year lake party, without Matt again, but now without Matt has taken on an entirely new meaning. A few days before that, G and I watched H graduate from Kindergarten, the same way Matt and I watched G two years prior, and my heart broke over the knowledge that Matt will never hear H read. Two days ago, the kids had their first day of camp, and for the first time since they started camp, when that bus pulled away, I set my own schedule; I didn’t have a battle against a brain tumor outlining my day, and I was hit again with the knowledge that not fighting without Matt is harder than fighting beside Matt.

The pattern seems to be whenever post-hope gets too loud, too static-filled, I struggle to connect with the easier days in our story. Whenever post-hope pushes me to the edge of a grief wave, as it has this week, I can’t help but stray into the darkest days and find myself losing my hold on hope.

I suspect as the days go on, as the birthdays, anniversaries, and milestones approach, post-hope will get louder. The challenge will not be to write the story—I’ve said before that some days are burned into my mind likes brands—but to not lose hope in 2018 as punch after punch is delivered to those past versions of Matt and Elaine.

What I know for sure is that I don’t want to lose hope. And hopefully, that’s enough to both deliver on my promise of light and love in the dark days to come, and to survive this grief wave, and all the ones after.

June 26, 2017: Hope Filled Premise

On June 26, 2017, the kids had their first day of camp, I tried out a new chia-matcha-coconut pudding recipe for Matt, and H had his first t-ball practice. As far as I remember, it was an uneventful day. The kids had a great first day at camp, Matt hated the pudding, and he didn’t end up coming to watch t-ball practice–because I told him not to. The practice was indoors, at a batting cage, and G and I barely had any room to stand ourselves. I told him not to worry about coming because he’d come to an actual game, outdoors, where there would be plenty of room to sit. He agreed standing in a cramped space seemed miserable; he’d come next time.

When I boil that conversation down to its most basic assumption, I find this hope filled premise: we had a lifetime of practices and games to sit through; We—he—could afford to miss one.

On June 26, 2016, the pictures in my phone tell me we spent the morning at the lake. The texts reveal nothing of what we did or what we were thinking. And for those reasons, I was mostly at a loss for the story of the day. Until I looked at the emails. A single email Matt sent while we were at a BBQ with friends reminded me how many issues we were juggling all at once, how we could never stop juggling, even on a Sunday, even at a BBQ with friends.

I’ve written about the quickly approaching deadline to make a decision on where to receive treatment. I’ve written about Duke’s request for a new MRI and how that was proving to be an impossible task. I haven’t yet touched on the idea of clinical trials and the question of methylated versus unmethylated tumors.

To explain, I need to backtrack slightly. When the pathology report arrived and the Sloan doctor delivered the devastating news, one particular piece of the brain tumor puzzle was still missing. Was Matt’s tumor methylated or unmethylated? Methylated tumors do better with the standard of care treatment (radiation and temodar) than unmethylated tumors. We already knew Matt had one favorable genetic marker (the IDH-1 mutation) and we were anxiously waiting to learn whether he also possessed this second advantageous factor. As of June 26, 2016, we didn’t know.

Despite not knowing, Matt was feeling pressure to sign up for a clinical trial at Hackensack and we were busy researching the trials for both methylated and unmethylated tumors. My memory is fuzzy, and my understanding might be skewed, but this is how I understood our options. If his tumor was methylated, the ethical rules demanded that he be put into a trial that also offered him the standard of care treatment (ex: standard of care + an experimental drug or standard of care + placebo). If his tumor was unmethylated, the clinical trial could compare the standard of care treatment to an experimental drug (for our purposes, that drug was Nivolumab) because the standard of care would likely be ineffective, anyway.

Matt was hesitant to enroll in anything at Hackensack until he learned whether Duke would take him as a patient. We reasoned we’d have a better chance of qualifying for the Polio virus clinical trial—which was only available to patients who’d experienced a recurrence—if we were established patients of Duke from the outset. The hope was, obviously, that Matt would never have a recurrence, that whatever treatment he did would destroy his tumor for good. But if not, polio was our backup plan.

On June 26, 2016, a dozen different roads stretched out ahead of us. Looking back, when I boil down how we approached every decision, I find this hope filled premise: the polio virus vaccine—the clinical trial featured twice on 60 Minutes—was going to cure Matt. It was just a matter of time.

When I write about our days, I often try to find the hopeful subtext in a conversation or decision, and often find myself in awe of how intrinsic hope was to our fight. How it was there, in everything, without us even realizing it. In post hope, there is no need to boil down every conversation and decision to its most basic element to find a hope-filled premise. Which sounds sad at first, but it’s not. It’s simply a reflection of the fact that hope isn’t hidden in subtext anymore. It’s extrinsic. It’s a conscious choice, everyday.

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A few sentences from Matt’s email. So many ifs, so many possible roads. Every time, we chose the path with the most hope. We never settled for less. We didn’t know how to.

June 25, 2017: Yankees

June 25, 2017 marked another last: Matt’s last Yankees game with H.

In yesterday’s post, I wrote that I couldn’t wait to get Matt in front of a doctor so that someone could (hopefully) invalidate my concerns. Today, I’m writing the exact opposite. I was uneasy about Matt going to the Yankees game, without me, because I was worried our friends would validate every pinch of worry I’d had. The only way to explain the contradiction is to shrug and acknowledge that brain cancer impacts an entire family, not just a patient.

The opportunity to go to the game had come at the last minute; we’d gotten a call from a friend who happened to have two extra tickets. The friend asked if Matt and H would like to go and they jumped on the chance. We scrambled to find H’s Yankees gear and lather up on suntan lotion before the long ride to the Bronx. And the entire time an ill-defined fear churned in my thoughts. I wanted Matt to be Matt at the game, but I wasn’t sure he could be.

I couldn’t put into words exactly what was causing my dull panic. I still can’t. Even with the benefit of hindsight in post-hope, I’m not sure exactly what I was noticing. As I wrote this post and tried to find the words, I Googled (again) symptoms related to the third tumor that will soon enter this story. Again, the results were irrelevant. Not one of the associated symptoms helped me identify what I saw in Matt. There was something in his humor, his logic, his wit, which was just that much off.

Even a year later, that feels cruel to admit and every part of me wants to add a footnote putting the fault on me for overanalyzing Matt. Or worse, for not accepting that life had thrown Matt a curveball and he couldn’t be the same Matt he was before a tennis ball sized tumor landed him in the ER. Maybe he was changed, because of life, rather than tumor. Or, maybe he wasn’t changed at all and I was examining every word he spoke too closely. Or maybe, the residual effects of tumor and radiation and treatment were beginning to impact these microscopic portions of personality.

Truly, I don’t know. And I won’t know. Brain cancer took so much of Matt so slowly that I will never be able to pinpoint the date his personality first started disappearing.

That internal conflict I wrote about yesterday (and many times before) raged on silently but surely on June 25, 2017.

A year earlier, on June 25, 2016, Matt and I also drove into the Bronx, but to go to the Bronx Zoo, not a Yankees game. More accurately, I drove (another first: my first time driving into the Bronx) and Matt navigated (no doubt wishing he’d been cleared to drive). We’d gotten a prescription for the MRI, but the radiology center we found wouldn’t let Matt make an appointment without pre-approval from the insurance company. And since June 25, 2016 was a Saturday, we weren’t getting through to anyone. We had the prescription, but we were still stuck.

The memory I’ve just shared from two years ago today doesn’t add much to the narrative. I could have skipped over this particular flashback since it doesn’t add any new information or conflict to the story. But the unlikely coincidence of Matt traveling into the Bronx on the same day, a year apart, struck me and I’m not sure why. Maybe there’s something poetic in the symmetry. Maybe any story involving driving over the GW Bridge will catch my attention (and trigger a flood of memories from the winter of 2018).

Or maybe I just like the reminder that even though everyday was a new battle (or an evolution of the same battle), we had so many good memories embedded into the days, too. A year ago today, Matt and H had a great day at the Yankees game, eating hot dogs and candy and hanging out with their friends. Two years ago today, we had a fun day at the Bronx Zoo, feeding llamas and seeing the animals. And those memories shouldn’t be lost or overshadowed, not even for this story.

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June 24, 2017: Too Much To Ask For

I don’t remember much from June 24, 2017. Matt and I left G and H with a babysitter and went out at night, but nothing in the texts or emails from this day helps remind me whether Matt was reluctant to go or whether he was looking forward to going, knowing we were only seeing a small group of friends. Our text messages don’t help me remember whether he had fun or he felt out of place. But I do remember being acutely aware of the calendar, and the fact that in nine days we’d be at Duke. I was anxious about the upcoming MRI, of course, but more than that I wanted someone with a medical degree to look at Matt, exam him, and tell me everything was fine. Because then I could stop overanalyzing Matt, I could stop giving in to that pinch of worry.

On June 24, 2017, all I wanted was to get to Duke so a doctor could look at Matt—really look at him, the way I did—and calm my growing anxiety.

In retrospect, that was too much to ask for. With brain cancer, sometimes the changes are too subtle to be picked up on by a stranger in a twenty minute appointment. Even a stranger with a medical degree and a specialty in neuro-oncology. Sometimes, the initial symptoms that could signal something is wrong are so tiny, so minor, they are all but invisible.

I started to write the symptoms were invisible unless you shared a life together, but that’s not quite true. They were invisible to me, too. I could not tell, on June 24, 2017 whether Matt was slightly off or I was slightly (thoroughly) overdramatic. And this internal conflict raged throughout Matt’s battle. Even months later. I spent just as much time questioning my own instincts as I did Matt’s actions. I often equated living and loving a Glioblastoma patient with the ultimate form of involuntary gaslighting (and I’ll explain that in a few months when it appears more prominently).

A year earlier, on June 24, 2016, Matt and I spent the day focused on a task that should have taken up the time of one phone call, but ended up consuming our day.

The well-respected doctor at Duke had told us to get a new MRI; he’d given us an instruction and hung up. We understood that meant it was up to us to figure out how to make this MRI happen. We called Duke, the main line and every other phone number we’d gathered via that extended network, and asked them for a prescription for the test their own doctor had ordered. They told us to ask our local oncologist. Not particularly helpful since we didn’t have a local oncologist, yet. Not officially, anyway. (Hence the phone calls to Duke.) We asked Hackensack to write Matt a prescription for another MRI. Hackensack told us that if Duke wanted Matt to get a MRI, then Duke should write the prescription. Which is not particularly helpful, and a little catty.

On May 9th, I wrote about foreshadowing. I wrote that the pattern of Hackensack and Duke clashing repeated frequently after the initial disagreement over whether or not to continue Temodar. As it turns out, I was wrong. The actual first clash between Hackensack and Duke came much earlier than I had remembered. (And therein lies the problem with imperfect memories and not planning blog posts in advance; I forgot about this early squabble between Hackensack and Duke until today.)

On June 24, 2016, we needed a simple MRI and all those who could give us access to a MRI, who could have helped us speed up the decision making process, pointed us to someone else.

Two years ago today, we went to bed without a prescription for a MRI. One day closer to needing treatment, not even a moment closer to making a decision. And all we wanted was somebody on our team.

In retrospect, that was not too much to ask for.

When I refer to our year in hope as a battle, these are the days I think of. The days we looked to the doctors to fight for us, but for whatever reason, they couldn’t. And we had to find a way to scrape and pull ourselves through to the next day on our own. We had to help ourselves.

 

 

 

June 23, 2017: Flashback #13…A Minute to Breathe

On June 23, 2017, we were ten days from a MRI that would mark the beginning of a new chapter in our fight against Glioblastoma. And ultimately, it was an uneventful day that I don’t remember well. Matt went to work. G and H had a playdate and we went out to dinner with Matt’s parents. Easy, normal, and oblivious. Or at least trying to be.

I remember June 23, 2016 with cutting clarity. It was G’s last day of Kindergarten and Matt had an appointment to get the staples out at the neurosurgeon’s office. I made (possibly the first?) need assessment: who needed me more, Matt or the kids? G, who wanted to celebrate her last day of school (at that end of the year lake party), or Matt, who was getting staples out. Matt’s mom offered to go with Matt to the appointment and I took her up on the offer. I chose to stay with G and H.

I said many posts ago, and frequently since, that I owe this story honesty. Sometimes that honesty won’t paint me in the best light. This particular need assessment wasn’t completely selfless. I wanted to be the one who got to hug G as she got off the bus on her last day of Kindergarten. I wanted the kids to go to the end of the year lake party, look up from playing, and be able to find their mom in the crowd, just like all of the other kids. I wanted a minute to just be with G and H, and breathe.

But as I wanted all of that, I knew it wasn’t fair because Matt couldn’t be afforded the same luxury, not for a while. For the foreseeable future, he’d never be able to take a break from any of it.

Matt called me after the appointment. He told me the neurosurgeon was pressuring him to make a decision, that he was stunned we were still discussing options. I remember feeling the looming deadline close in tighter, that panic I thought I’d be able to escape for an afternoon wrap firmly around my heart. And then Matt told me the neurosurgeon asked about me. Why isn’t your wife here with you? And I unraveled. That simple question tore open all the guilt I’d been trying to stuff down. Because I heard it as: why isn’t your wife supporting you?

I couldn’t stop the tears, the gasping sob, and I couldn’t get away from the crowd fast enough. It seemed to me as if I’d made a need assessment and chosen myself. I couldn’t think of a worse sin.

On June 23, 2016, I didn’t yet know that there would never be a right choice or a wrong choice. I couldn’t know that I would always feel guilty not being there, wherever there was. And, I hadn’t yet learned that the rate of brain tumor caregiver burnout is extremely high and it’s okay—necessary, even—to take a minute, if you can find one, to breathe; it’s not selfish to take care of yourself, too.

Looking back, living what we lived, I can understand why the idea that the neurosurgeon thought I wasn’t supportive enough devastated me as much as it did. I was terrified that he was right, that I wouldn’t know how to be supportive enough. I didn’t think I’d be able to support Matt through all that we needed to do. I was thirty-three, but in this, I felt like a child, and every day it seemed as if I was trying to help steer a ship forward, but I had no idea which way was forward, anymore.

I don’t know if I did everything right, if I was all the support Matt needed. I know sometimes I let fear and anger and despair gain too much space in my mind. But I know I did the very best that I could do. I wish I could have done more. But I have to hope that my best was enough.

I have a feeling, at least when it comes to this, your best is always enough.

June 22, 2017: Flashback #12…Initial Contact

On Thursday, June 22, 2017, I took the kids to the town’s 4th of July carnival. Matt didn’t meet us and, once again, that pinch of worry returned. The story of a year ago today doesn’t look all that different from the day before, or the day before that, except for one critical difference: I was starting to make excuses. Whenever anyone asked about Matt, I found myself finding valid reasons to explain why he couldn’t make it. Looking back, I wonder whether I was trying to ease that pinch of worry for myself, too.

A year before that, we were still reeling from Sloan’s prognosis, still clinging to the hopeful spin Hackensack put on Sloan’s prognosis, and desperate to figure out a plan. We were determined to make sure that plan involved Duke, the best brain tumor center in the country, the institution that was blazing a path toward the cure.

Days earlier, we’d called the main line at Duke and a voicemail picked up. The recording said something along the lines of: your call is important to us; we will call everyone back, but since the 60 Minutes special, we’ve been overwhelmed with phone calls and we can’t guarantee when that callback will occur.

I said just a few days ago that I would never use the word lucky when it comes to what happened to Matt. But, in writing the story of today, I realize that I may have to add an asterisk to that sentence. Because while we weren’t lucky when it came to what happened medically, we were incredibly, enormously lucky with the friends and family who stepped in to fight alongside us, who called on their friends and family to get our name in front of the care coordinator. And thanks to that extended network, the care coordinator returned my call just hours after I left a voicemail. She told me to send Matt’s medical records and MRI and I did.

My clearest memory of June 22, 2016 comes after the kids had gone to bed. I remember the blue-black color of the sky and the annoying swarm of mosquitoes attacking our arms and legs. I remember sitting outside with Matt, talking about something I can no longer remember (although cancer and treatment plans would top my list of guesses), and freezing mid-sentence when my phone started buzzing. A blocked number. I answered and the voice on the other end of the line belonged to a doctor at Duke, the most well-known doctor at Duke.

This well-known doctor, whose bedside manner is as notorious as his brilliance is respected, told us he’d received and reviewed Matt’s medical records and MRI. But the MRI was too blurry for him to accurately see anything and we’d need to get another one to send to him. Then he hung up. The call lasted maybe two minutes. I think we managed to whisper a shell-shocked thank you before the line disconnected.

At this point, we weren’t sure how Duke would fit into the treatment picture. We knew only we needed them on our team. So, if Duke wanted a MRI, Duke was getting a MRI. (If only it was that easy.)

Looking back, I know we found valid reasons to choose Duke long before that first brusque conversation. But knowing how the story will unfold, all the ways it often felt like Duke abandoned us, I can’t help but be unsure as to which light to view this memory, this initial contact. Good memory or bad?

Before Matt was diagnosed, the words brain cancer and Glioblastoma weren’t anywhere near my radar. I did not know Duke was one of the most (the most?) respected brain tumor centers in the country. And as I was writing this post, I was trying to remember how Duke entered the conversation, who told us that Duke was the place to go for treatment. I keep trying to think of the moment Matt and I pinned our hopes on Duke, rather than any of the other top ranked brain tumor institutions. I’m not sure we did much research on the others at this early stage. I think we watched the 60 Minutes feature, traded articles featuring miracle stories of patients who were treated at Duke and thriving, and internalized Duke’s motto: At Duke, there is hope.

That’s all we wanted. Hope. Because we couldn’t fight a disease if we didn’t believe we would win.

Which means, even with all the benefit of hindsight, I’m choosing to remember how excited we were to have received a call from this well-respected doctor. How we laughed off his brusqueness. How we felt halfway down the road to a miracle. Good memory.

June 21, 2017: Flashback #11…The Pathology Report

June 21, 2017 was the first official day of summer break. G and H had playdates in the morning, and later that night, I took them to the lake to roast marshmallows. Matt decided not to meet us and that pinch of worry I wrote about yesterday was back. The story of this day one year ago does not look all that different from the story of the day before.

But, a year prior, on June 21, 2016, our story took a very dramatic turn. Matt and I went to Sloan for a second opinion appointment with a doctor we’d never met. I remember the moment this man who we’d never met walked in. I remember the paper in his hand and the heavy way he fell onto the stool. The way he looked at Matt and shook his head and sighed. I remember every heartbeat of the moment when I knew a truth I’d been dreading was about to be spoken aloud.

Two years ago today, we heard the results of the pathology report. The doctor at Sloan confirmed that Matt’s tumor was primarily a Glioblastoma, Grade 4. He told us that most people don’t live more than 18 months. He said only 25% of people make it past 2 years and after that the numbers drop significantly. He advised that Matt should get his affairs in order.

He stomped out hope.

We sat, stunned, as the doctor talked treatments. The recommended timeline to start treatment was 4-6 weeks after surgery and Matt was already two weeks out. The doctor conducted the most comprehensive mental and physical exam I’d seen to date, using instruments that wouldn’t appear in our lives again until Matt was in the ER at Columbia. Afterward, Matt and I sat outside and tried to wrap our heads around the news this stranger had delivered. And the more we churned over Sloan’s words, the more shock turned to anger. And we could do something about anger. Call Hackensack and accuse them of misleading us, betraying us, even. How could Hackensack have told us that Matt would be fine and Sloan tell us to get Matt’s affairs in order?

The doctor at Hackensack admitted that the picture he’d drawn with his words of comfort the week before had changed with the pathology report. But he told us not to look at the statistics. He told us that some people beat the disease, defy the odds. Matt’s tumor contained an IDH-1 mutation and studies had shown that patients with this mutation generally live longer. He gave us a reason to hope.

We went home to where Matt’s parents were babysitting the kids and, sitting on the playroom rug, we told them what Sloan had said. We talked options. We talked Duke and treatment overseas. We talked about never going back to Sloan. That day, we said whatever we did, we’d do as a team.

For me, I’d found my next glimmer of hope, my next research project. I read every study I could find that looked at IDH-1 mutations in GBM patients, and I clutched every positive statistic like a lifeline.

I write often about how I felt when we received bad news. I guess at what Matt was feeling. But I know exactly what Matt was thinking two years ago today. It’s all there, in text messages he sent. He talked about Duke, the side effects of radiation and chemotherapy (which I’ll get into in the coming days), and the sudden deadline we faced to pick a treatment plan.

And he added this final thought, loaded with disappointment and realism, hope and selflessness: So overall pretty shitty report but again this guy [Hackensack doctor] thinks I might have some mutant gene where I am fine so sorta back to unknown for another week or so. Even with the bad diagnosis, it’s not immediate, although 2 yrs flies by. I don’t want ppl worried about me but of course want to live and raise kids and not leave elaine, etc.

Matt was right that time would fly by, though we didn’t even get two years. And we didn’t know—couldn’t even begin to guess—how much of the time we did have would be consumed by doctor appointments and hospital stays and pinches of worry as Matt pulled away from himself.

Writing this post, remembering that two year milestone, has left me somewhat speechless. I’m not sure how to make sense of the fact that two years ago today, a doctor told us Matt wouldn’t make it two years, and he was right. There’s no way to spin that positive. But I warned from the beginning that this story had a sad ending. I was never writing to make sense of our ending. The story I wanted to share has always been the one of everything that happened in the middle. The relentless drive to find a cure and the teamwork that strengthened already powerful bonds. The good days and the bad days and the unfaltering hope weaved through it all.