March 31, 2017: First day of the rest of our lives

Matt was discharged from the hospital on this day a year ago. Instead of flying back as planned, on doctor’s orders we stayed in North Carolina. We walked around the gardens, took in a tennis match next to a bunch of hungover college kids who made us feel super old, and discussed the pros and cons of sending our kids to Duke (as if we had a say in the matter). We shopped at the campus stores and we were so high on Duke that Matt bought a hat, despite a family connection to UNC. We were Team Duke all the way.

All the while, I kept staring at Matt (a habit he grew to really despise…whoops) as if I could see what was happening inside his brain if I just looked hard enough. But I couldn’t help but think about the fact that I was walking around with someone who had an experimental virus infused into his head. Sounds like the beginning of some sci-fi movie, really. We had NO idea how his body would react, how his tumor would react. How he would react. The doctors warned us that most likely there’d be some brain swelling in a few months (all to be expected, just the immune system kicking into high gear). If it happened, we’d deal with it then, but otherwise, we should expect life to go back to normal.

But normal had gone out the window way before he was diagnosed in June 2016, when Matt’s behavior had become so strange, so unMatt-like that I was worried our solid marriage had started to crumble. Luckily, our marriage was just fine; it was everything else that would begin crumbling and we never quite had the chance to rediscover what normal looked like.

I’m typing today after a rough night in this post-hope year. Yesterday, we celebrated Passover. I’m not religious. Matt wasn’t particularly religious. It didn’t occur to me that the day would be tough. And yet, sitting at the table, sandwiched between Matt’s parents and the kids, all I could think about was what we had all lost, who was missing and how desperately I didn’t want to have to do all of this without him.

I picked up my phone a dozen times to text a friend, someone, anyone, about how surprisingly hard this day was for me, and like so often happened during the last year, I put my phone down. Because, actually, misery doesn’t love company. I didn’t want to ruin someone else’s night with a one line message. I didn’t want to leave someone else feeling as helpless and hopeless as I felt. Looking back now through Matt’s emails and texts during this time, I can see that he shielded his friends and family from the worst of it all, too. Even when I could see him falling apart in front of me, his communication to the people he cared about revealed nothing of his struggle. He never, not once, broke down over the hand he’d been dealt. Not even in front of me. There’s a heartbreaking selflessness in that small act that speaks to the grace Matt showed every day of his battle.

This blog was born out of the idea that a year ago today, even in my darkest, middle-of-the-night fears, it didn’t occur to me that Matt wouldn’t be here, that on March 31, 2017, we had less than a year left together. Though we were only a year younger then (young and naive and so very, very hopeful for the future), I feel like I am infinitely older today.

Team Duke all the way.

March 30, 2017: Infusion

It is an insane, Twilight-zone worthy thing to be put into a situation where you find yourself hoping that doctors detect a deadly and dangerous brain cancer in your head. But that is exactly where Matt and I found ourselves one year ago today: confused, upset, stressed, excited, hopeful, fearful. All of it.

The infusion of the polio virus into Matt’s tumor was supposed to start at 9 a.m. sharp. Then 9 a.m. turned into 10, which rolled into 11. No doctor. No infusion. No word from anyone who knew anything.

The trial protocol required that the presence of GBM be confirmed, via biopsy, before the virus could be infused. In one or two cases, the patient had reached the point of infusion and it turned out that the spot on the MRI was something called radiation necrosis, which is simply a side effect of radiation.

For us, if the spot on the MRI was not GBM, then the stress and the prep of the last two weeks had been for nothing; we’d be sent back home to continue waiting for that inevitable recurrence. But hooray, if we were sent home then that meant his cancer hadn’t returned so soon, and why wouldn’t that make us happy? What kind of crazy person is even a little disappointed that the doctors did not find GBM?

Of course we would have been happy to pack it up, go home to our kids, and return to praying for a recurrence-free life. But that’s happy with an asterisk. Because for the last month, we’d believed his cancer had come back. We’d worried that it would grow too fast. We’d scrambled to pick a treatment, get the initial lab work done, fill in paperwork, all while convincing ourselves that this was it. After this, Matt would be cured and we wouldn’t have to go through this exhausting process again. And there’s something in that: in the idea of knowing you are cured, that you are living your life without the shadow of cancer hanging over you that had captured us.

We wanted the doctors to find GBM now, so we’d be safe later. In retrospect, maybe we should have been more realistic and taken whatever time without a recurrence. Enjoyed the present, I guess.

By noon, 1, 2, we began emailing the lead neuro-oncologist asking for information. A short time later, she arrived in Matt’s room to tell us personally that GBM was confirmed. We all, the nurses and doctors included, breathed a sigh of relief. We were cleared to go.

Now, I have no medical degree. I know nothing about GBM except for what Google and experience have taught me. But at the time, I thought, and I said to Matt who agreed, that this was great news. If it took this long to confirm GBM, there must be only be a few GBM cells in there. Polio would make quick work of those few cells and we’d be on our way to happily ever after. Given how Matt’s story played out, I suspect my cute little theory was wrong.

The clinical trial nurse arrived with the polio virus and hooked it up to the catheter. Over 6.5 hours the virus dripped straight into the tumor.

We always aimed so high. Even months later, when Matt’s health devolved daily and the doctors told me we weren’t playing for a cure anymore and hope was replaced by delusion, we never set our sights lower than a cure.

All smiles while waiting for the infusion. The picture below is Matt’s text to his brother-in-law trying to explain how weird it is to hope for bad news.

 

March 29, 2017: Biopsy

Glioblastoma (GBM) is a vicious cancer. The statistics don’t lie. Most people don’t survive five years. The numbers are bleak even for two year survivors. There are outliers though, people who for whatever reason survive ten years plus with no recurrence after the initial tumor was diagnosed and treated, or who survive despite suffering recurrence after recurrence. Those outliers are the reason we ever had a glimmer of hope. Some people survive. Some people get lucky. Some people are cured.

Matt’s cancer came back in February 2017, 8 months after his initial diagnosis. I wish I could say this was shockingly fast. It felt shockingly fast to us. But, in the grand scheme of GBM, 8 months is exactly the average time for a recurrence.

Matt made a decision then: he was done trying treatments (like surgery and immunotherapy) that would only prolong his life. He wanted more than a bandaid. He didn’t want to be in and out of MRIs and doctor appointments every few weeks for the rest of his life.

We had heard, back when Matt was initially diagnosed, about an incredible treatment at Duke that had been granted breakthrough status by the FDA. People had been cured. The medical world was excited. The results, so far, were stunning. People had been cured!

The theory behind Duke’s clinical trial is that a re-engineered polio virus (re-engineered to replace the deadly portion of polio with a bit of cold virus) would destroy the tumor from the inside out and (AND!) awaken Matt’s immune system to the presence of the cancer it never noticed before so the cancer couldn’t come back. A two-pronged attack.

This new, modified polio virus would be dripped straight into the tumor via a catheter inserted on the same day a biopsy was done to confirm that the tumor was, in fact, GBM. No major surgery required even. People were cured!

We were treated like celebrities by the nurses and receptionists at Duke, applauded and congratulated for gaining access into an exclusive club that everyone wanted in on but few were admitted. Matt and I joked about him making it on the next 60 Minutes documentary.

That was the first night I went to our hotel room by myself. Matt’s dad had already left to fly back home and, after I made sure Matt was settled, I called the hotel shuttle to come pick me up. This may sound insignificant but it felt momentous. Matt always called the shuttle. Matt made the small talk and charmed the driver. Matt made sure we didn’t eat cheese sticks and ginger ale from the hotel store for dinner.

It had been a day full of hope and jokes and smiles; the biopsy had been a piece-of-cake, no complications, easy-as-can-be procedure. But as I made my way from the elevator to our room, which was now just my room, and listened to the hollow silence where Matt’s voice should have been, the hallway seemed to stretch out a mile and I wasn’t sure I’d make it to my room. My legs felt suddenly too heavy to carry me any farther, overcome by the staggering weight of reality. The polio treatment was experimental. It had cured people, but it had killed people, too.

Tomorrow would be a long day, the 6.5 hour IV drip. Tomorrow would be back to hope and jokes and smiles and the certainty that Matt would be one of the lucky ones. But that night, in my traitorous head, when I finally, finally, made it to my room, I let myself worry.

Waiting in pre-op to be taken in for the biopsy.

March 28, 2017: Prep Day

March 28, 2017 began bright and early with a 7:30 appointment for blood work at the Duke Cancer Center. From there, Matt and I headed to the Duke Medicine Pavilion (the DMP) to meet with a neurosurgery PA, who placed fiducials on Matt’s head. (What is a fiducial? See picture below for the green jewel looking things; their purpose is to somehow help guide the neurosurgeon during brain surgery.) For the rest of the day, Matt walked around the Duke campus with these things on his head.

We joked about how ridiculous he looked, cracked ourselves up when we noticed the strange looks he got around campus. But this is what Matt and I excelled at all throughout his treatments: making each other laugh, pushing away the darkness and the looming weight of what was about to happen.

We’d always been good at making each other laugh. Matt liked to call us the best couple ever. He liked to say everyone wanted what we had. While I am completely sure that’s an overstatement (what we had was perfect for us but perfect isn’t a one-size-fits all word), our sense of humors just clicked. I knew from our first date that we were something special. I don’t even have to close my eyes to remember laughing with him about The Love Boat after dinner at The Coffee Shop or the way his eyes crinkled up at the corners with laughter at himself as he poured me a glass of wine from a bottle of Riesling he admitted was meant for another girl.

At 9, he had another MRI. At 10:30, we met with the neurosurgeon to discuss the next day’s biopsy and were told we couldn’t leave Friday as planned; we’d have to stay one more day just in case. At 11, we met with our neuro-oncologist to review the MRI. If the tumor had grown more than a certain amount since the last scan, Matt would be disqualified from the polio trial at the eleventh hour. Turns out, the tumor had grown, but not too big. We were cleared to go.

At 12:30, he went for pre-op screening. Sometime after that, our day was done and we had nothing to do but wait again.

We didn’t go out for dinner that night. A sense of humor can only take you so far. Matt’s dad flew in to be with Matt for the next day’s biopsy. The three of us ordered sushi and ate in the hotel’s outdoor seating area, despite the thick layer of yellow pollen on the chairs and tables and my wildly out of control seasonal allergies.

I couldn’t tell you what we talked about. I can tell you what we did not talk about though: the possibility that polio wouldn’t work.

Because it never crossed my mind.

If you ever wondered what hope looks like: it’s walking around all day with these sci-fi looking things on your head and a doctor’s initials scribbled behind your ear.

March 27, 2017: The Day Before

Killing time the day before the polio protocol at the movies.

On a Monday morning one year ago, Matt and I left the kids and flew to North Carolina. Flying high above the state, we could see that some of the trees and plants had started to blossom. Too many others remained bare and bleak. I didn’t know if they would blossom soon or whether they hadn’t survived the winter. But I worried.

The 2016-2017 winter was an odd season. A heatwave of sorts hit in December and some of the trees in New Jersey began to blossom, confused by the warm streak in the middle of winter, tricked into believing it was Spring. By January or February or so, a burst of absurdly cold air gripped the Northeast.

Watching the blossoms on the trees on my jogging route that winter became my own personal vigil. I’d study them as I’d run past. Did they look smaller or grayer? How many had surrendered and dropped to the sidewalk, overcome by the cold, unrelenting wind? Would they make it through the next forecasted storm? Would new ones take the place of those that had fallen.

I could do nothing for the blossoms but watch helplessly and count down the days until winter was officially over.

Flying over North Carolina and seeing the patches of bare branches among the bursting flowers revealed the extent of winter’s reach. I had no way of knowing whether the trees and plants survived, whether they just needed more time or the brutal weather had been too much. But, my anxiety swelled. Was anyone else paying attention? Was anyone else watching out for these trees?

We checked in to the hotel in Durham on Monday and found ourselves with free time. No kids and a lot of hours to not think about the next couple of days, the procedure that would cure Matt’s brain cancer. We took the hotel shuttle to see Logan. I can’t remember for sure, but I’m almost certain Matt made small talk with the driver, who knew we were staying in the hotel under a medical reservation thanks to the color of the shuttle ticket we showed him. The driver, whose name escapes me now, came to earn a front row ticket to Matt’s battle.

I often wondered during those first trips to Duke what the drivers thought of us. A young couple, staying at the hotel, going to the movies, to dinner, to the trendy areas, staying under a medical reservation. I wonder if they tried to guess why we were there, which of us was sick.

Eventually, it became obvious.

I wonder often about the people in North Carolina who played a role in our visits if they ever think of us and wonder why we stopped going. If we faded into the sea of guests who have come and gone to Duke for treatment over the years. If they know why we stopped coming and hope it’s because the cure worked.

As it turns out, that Spring, a lot of plants never blossomed. But even more survived.

March 26, 2017

image_543753888846794

Family time before heading to North Carolina. Bottom right is Matt’s Ensure, recommended by the doctors because the chemo made him lose too much weight.

Hope was the driving force in my life on this day, as I packed a bag and wrote out schedules for G and H for the week. Matt and I would be leaving for North Carolina, going to Duke to see the doctors who would cure him.

Yes, cure him.

Let me back up…

Matt was diagnosed in June 2016. At the time we reached out to Duke for help. They told us, for a multitude of reasons, to stick with the standard of care treatment locally. Six weeks of radiation followed by six months of chemotherapy, only to be told that the MRI showed something.

The tumor was back in a new section of his brain.

We scrambled. We panicked. It wasn’t supposed to come back this soon. EVERYBODY had said Matt’s tumor had all the favorable genetic markers. The doctor at Duke, who we’d met months earlier just to establish a relationship, said Matt would see his kids graduate high school.

After we got the MRI report, we applied for the polio virus trial at Duke. It had cured people and been featured on 60 Minutes. The first patient was cancer free after five years. At first, Duke told us Matt may not qualify. We explored other options. They sucked. There were trials that required weekly IV infusions that could make him sick, surgical options that were nothing more than bandaids. We wanted a cure. When Matt got the call that Duke accepted him into polio, we cheered.

Bent over our kitchen table, huddled over the phone on speaker, scribbling notes as fast as we could while the kids played in the playroom (snow day for them), we cheered the news that Matt would get a treatment that had cured patients, that there was an end in sight to his disease.

The Duke doctor cautioned us that polio was as effective as other immunotherapy; it was not guaranteed. I understood but was sure for Matt it was a cure. How could it not be? For his part, Matt was more practical, but he wanted to fight for a cure, not a few extra years, which is what the other treatments offered.

High risk, high reward.

So, we signed the paperwork. Did the initial lab work. And on March 26, 2017, we packed for a week long trip to North Carolina to chase “the cure.”

Yesterday, on our way to her friend’s birthday party, G told me it wasn’t fair that her friend gets to have her daddy at her birthday party and she didn’t. What can I say except I know, but he’s there in spirit…and that we tried.

On The Other Side of Hope

 

“The boundaries which divide Life from Death are at best shadowy and vague. Who shall say where the one ends, and where the other begins?”

– Edgar Allen Poe

cropped-image_5436749409058561.jpg

This story does not have a happy ending. Our young hero does not survive and love does not conquer all. But I feel compelled to tell the tale anyway. Because for a year we lived with hope–a fair amount of delusion and anguish and fear, but mostly hope.

And I don’t want to forget any part of it. The good, the bad, and the incomprehensible, hopefully remembered through photos, texts, emails, and my own imperfect memory.

This is also for the kids. One day, when they are older. They know their dad fought for them, but how can they understand what that means? There’s no way to distill his last twenty months, why we did what we did and how we survived, into a conversation.

So this is for them.

And me. Because the past haunts me and I am on the other side of hope.