July 21, 2017: Protecting Hope

Yesterday I wrote that I started fixating on that comment by the Columbia doctor. Those words—uncommon and concerning—had gripped me. The story is no different a year ago today, on July 21, 2017. I texted with a friend and wondered whether I should reach out to a medical professional to ask for clarification. My friend suggested I contact the nurse at Duke.

I wrote: Maybe. I miss our clinical trial nurse for that reason.

The day stretched on and, by evening, after all the offices had closed for the weekend, I had decided not to put my fears into words. Although “decided” may be too generous of a word. Failed? Chickened out?

I had chosen ignorance and the old adage that ignorance is bliss. Although, in my case, ignorance was bliss with a side of unspecified, ever-present worry.

What about Matt? Yesterday I wrote that I bored into the depths of the Internet and read horror stories, but never shared those stories with Matt. But did he open up Google and begin his own search? Did he fixate on the fact that his tumor had traveled to the other hemisphere of his brain? I can’t know the answer. I don’t know what he did during his downtime in the office or in the hours I napped on the couch while he was stuck watching the movie I’d begged him to put on.

But my instinct is that he did not look. Not because he had decided on ignorance. Or because he’d failed or chickened out. I think he’d simply decided that it didn’t matter what Google had to say or what stories others had lived. I think he’d realized what I didn’t: that ultimately no one’s story could predict our story. In the world of brain cancer, maybe in the world of real life even, no single story can predict the trajectory of another story.

I think Matt realized that whatever result appeared after clicking the “Google Search” button wouldn’t have changed one moment of what we did next. We had decided to follow Duke, put our hope into the poliovirus and the reputation of the doctors. Whether his tumor was uncommon or concerning wouldn’t have changed the fact that we were on our chosen path, and our chosen path had the possibility of a cure waiting at the end. Our own version of a pot of gold at the end of all those rainbows.

Matt and I handled things in very different ways. I doubt there’s a right or wrong way. Too often, I felt how small and alone we were in this battle against a disease. We had Goliaths behind us—Duke and Columbia, and in less direct ways Hackensack and Sloan—but often, to me, it felt like we were ill-equipped and abandoned on the front lines. I needed the worry and research in order to feel like I was in control of the situation, like I could have some impact on what happened next. But Matt, who was never as much of a worrier as I am, needed to look forward, keep himself busy with the present in order to protect himself and his hope.

I find myself doing a version of that in Post Hope. Keeping busy to protect myself and my hope. Last year, I let the full force of ever-present worry in. I let it consume me, eat away at my thoughts during every free moment. But in Post Hope, I cannot let the grief in with its full force. Sometimes I can feel the weight and power of that force just behind the floodgates of consciousness and I know I would not be able to bear the weight of the deluge if the floodgates opened. So I keep busy, let in one manageable scrap at a time, and hope I’m as good as Matt at protecting hope. That works for me, for now. I suspect, once again, there’s no right or wrong way.

What I’ve found is that protecting hope takes a little more work than finding hope; it’s sometimes an exhausting endeavor. And, also, it’s worth every grain of effort.

July 20, 2017: Realm of Possibility

I start every summer with a long list of ambitious to-dos. That list has included anything from paint a wall in G’s room (very ambitious and completely unrealistic) to clean out the kids’ closets in order to make space for the next size (not so ambitious and yet also, apparently, unrealistic). Every year, the summer flies by, most of my list remains untouched, and I find myself asking what I did with all that time I had while the kids were at camp.

I know what I did last year with all that free time. I wrote. I listened to audiobooks while making green juices for Matt. I Googled. I looked at my long, untouched list of to-dos and opened the laptop to search the same terms I’d searched the day before. “GBM and new tumor” or “GBM and separate lesion” “or “Glioblastoma in a new location”. The results that appeared never confirmed or denied whether it was uncommon for a tumor to move around so much. The results never confirmed or denied whether Matt’s newest tumor was more concerning than Duke had let on.

When Google failed me, I turned to the brain cancer forums. I scanned the stories posted by patients and caregivers and looked for a story that sounded similar. I checked again to see whether the woman who’d said she was cancer free after receiving the poliovirus vaccine at Duke had responded to my message or posted again. I paid particular attention to the fact that her tumor had returned post infusion, but that her poliovirus-infused immune system had fought off the tumor cells. I memorized the words of her story and imagined writing our story of triumph one day.

Digging into the depths of these forums, I found less than flattering opinions about poliovirus and its side effects. In those forums, I also learned the horrors associated with late stage GBM. My heart broke for every story I read, stories I never shared with Matt because he didn’t need to know, stories that I swore would never be ours because they seemed outside the realm of possibility. These were stories about horrors that could not actually happen. Especially not to us, not to Matt, who was so smart and strong and young. But I read all the stories, all  the time. Because knowledge is power, right? Because some part of me thought if I knew what could happen, it would not happen. Glioblastoma had snuck up on us three times already, but this time I’d be armed with all those stories and I wouldn’t let GBM sneak up on us. I’d outsmart it. With will power and Frankincense oil and a stubborn refusal to lose to this aggressive disease.

When the story became ours, when I lived the things I’d only read about, the story still seemed outside the realm of possibility.

Most days in Post Hope, this story, and the horrors buried within this story, still seem outside the realm of possibility.

A year ago today, when the kids came home from camp, I shoved every awful story I’d read to some faraway compartment in my mind (to be retrieved the next day when I restarted that useless Google search), and took them out for ice cream with their friends. Matt went to play tennis at the lake. When he came home, he was disappointed in how he’d played, which wasn’t unusual—everyone’s entitled to an off day—but warning bells silently pealed.

I often talk about how our hope was accompanied with naivety and denial. But maybe we weren’t as naive as I thought. I knew exactly what the future could hold. I knew, in sometimes gruesome detail, the horrors that had befallen others who suffered from Glioblastoma. I just also knew Matt.

And Matt defeating GBM, even an unusually aggressive form of GBM, was not outside the realm of possibility.

July 19, 2017: In The News

A year ago today, Matt had an appointment at Columbia for Avastin. Only sixteen days had passed since his previous Avastin infusion, but the discovery of the third tumor had prompted Duke to increase the dosage and frequency of that black box drug, the one Matt had started simply as a way to manage the swelling from the poliovirus. We never signed up for Avastin as a treatment—all the studies proved Avastin did not help overall survival in GBM patients. Yet, we didn’t question why suddenly Avastin was being pumped into Matt’s system with an alarming urgency. I think we were so swept up in this latest treatment plan that it didn’t occur to us to ask.

The infusion center was running late. Matt waited an hour and a half for his infusion. Afterward, he called me from the neuro-oncologist’s office and placed me on speakerphone so I could hear what the doctor had to say.

I can’t remember why exactly I had chosen not to go with Matt. My best guess is that we assumed Matt would breeze into the city, receive his Avastin, share a quick hello with the Columbia doctor, and return to work. We assumed this appointment was irrelevant, nothing more than a way to check the box to continue receiving Avastin at Columbia. We’d already spoken with the doctor at Columbia about our options and filled her in on our decision to follow through with Duke’s treatment. We’d reviewed the latest MRI ad nauseum with Duke and Hackensack. I think we both assumed no new information could possibly come from the day’s appointment.

My memory works in strange ways. I’m terrible at remembering faces (and truly sorry about that flaw), awful at recalling names of restaurants. G and H will tell you that unless I write something down, I’m completely scatterbrained (especially in post hope). But sometimes, I’ll memorize a license plate just by glancing at it. Sometimes, I’ll read a book and remember the exact moment I read a particular line. And sometimes, I’ll burn the words someone speaks into my memory and remember them long after that person forgot they uttered the words at all.

That’s the reason I remember that Hackensack said Matt would be fine, and Duke said Matt would see his kids graduate high school. There’s no record of those sentences. It’s just my memory.

On July 19, 2017, I burned another sentence into my memory. But until I started reviewing the text messages from today, I thought the words existed only in my memory. Apparently, though, the particular sentence that I remember from today also exists in a text message to a friend.

At 2:02 p.m., in response to the question whether I’d spoken to the doctor, I said this: Yep all good. Didn’t have much new to add except it’s uncommon for a tumor to move around so much. Usually regrows in same spot or nearby. She [the doctor] said it’s concerning but if he’s feeling good and not symptomatic then keep on doing what he’s doing.

I spent the rest of that afternoon Googling GBM and tumors in new locations. For the next few months, every time I opened my laptop I typed in a variation of that same search. Maybe looking for confirmation. Maybe hoping to soothe the anxiety that statement churned up. But the search produced nothing, every time. I wouldn’t learn the word to describe the situation until November 17th.

Something else happened July 19, 2017 and it has nothing to do with Matt, not in a specific way. One year ago today, Senator John McCain announced he’d been diagnosed with GBM. I would never—ever—wish this disease on another family and I remember the incredible sorrow I felt for the McCain’s because I could picture every moment of their first awful days in the hospital, could imagine how devastation crashed against hope upon hearing the word Glioblastoma. I knew in a single moment every heartbreaking second they’d lived, even though their story was undoubtedly different.

A flood of articles followed McCain’s announcement. A few articles called him a warrior and said something to the effect of “if anyone could beat GBM, he could.” Following those articles, I read a number of articles that were upset with the warrior and fighter terminology for a bundle of reasons that don’t matter to my post. What mattered is that people were talking about GBM. Because maybe that chatter would turn into donations. Maybe those donations would turn into researchers shifting their focus toward a cure for a disease that is often ignored due to its rarity and mortality rate.

Maybe all that chatter meant we—Matt, me, the McCain’s, every family impacted by GBM— had a little more hope than we had the day before.

July 18, 2017: One Day and Suddenly

July 18, 2017 was exactly one week into the 6 week CCNU cycle. The handout we’d received from Duke had informed us that the worst of the side effects—low white blood cell count leading to risk of infection and low platelet count leading to risk of bleeding—wouldn’t manifest (if at all) until week three. Aside from the minor personality differences that I noted, Matt seemed fine. He hadn’t had a headache since July 11th. He’d scheduled all the Avastin, blood work, and MRI appointments for the near future. We were settled into our summer in a way that felt like we finally had a handle on our lives.

A year ago today, I texted Matt two pictures. One, of H actually participating in an activity at camp, and another, of G using the basketball hoop that had taken Matt all weekend to build.

He responded by saying: you have no idea how happy that pic makes me. Or maybe u do 🙂

On July 18, 2017, I did know what made him happy, or at least I had a good idea of what made him happy. I knew which photos of the kids would make him smile; I knew his favorite dinner, his favorite drink, his favorite author and favorite show. I knew what to say to make him laugh in the middle of an argument or what not to say when he was ranting about work.

And then one day, I didn’t know, anymore.

One day, everything I said made him more irritated. One day, there was no funny story I could tell or snack I could bring that made him smile. Suddenly, it was easy to believe that I was never saying the right thing or supporting him the right way. Logically, I knew Matt was no longer in control of himself, that brain cancer had taken over, but illogically, I couldn’t stifle the voice that had slipped into the places where my heart had broken, the voice that questioned every moment, that told me I was doing everything wrong.

I wrote a similar post to this one on May 31. I wrote that even in post-hope, it’s difficult to admit that many days it felt like I made his day worse instead of better. And the closer the story takes me to those days, the more the fear creeps in. I’m afraid that it’ll be obvious that it was my fault I couldn’t make Matt happy. I write so often about villains and I am terrified that in true unreliable narrator fashion, the story will reveal that I am the actual villain. Apparently, that quiet, slippery voice is still there, still cruel and questioning.

But the painful reality of brain cancer is that “one day” and “suddenly” are lies. The sad truth is that there won’t be a day in this story when I’ll write today is the day Matt stopped being Matt or today is the day I let that cruel voice grow too loud. It was all a slippery slope.

I can’t go back in time and tell myself not to listen to that voice. I can’t warn the July 18, 2017 version of myself to hold on to those texted words and the smiley face that accompanied them because too soon the smiles and banter will be gone. All I can do is tell the story, find a way to stop listening to that voice (through telling this story), and, as always, hope to make a little good.


July 17, 2017: Emails About Nothing

One year ago today a violent, surprise thunderstorm tore through the town. The wind knocked down wires by the entrance to the highway and the police texted an advisory that traffic was backed up for miles. I don’t remember the traffic being backed up, or the wires down, but I remember the storm. I remember watching—from a bench at the ice cream parlor where G, H, and I had gone to celebrate G passing the level 1 swim test—the dark storm clouds crawl in. I remember G and H had barely taken a bite of their ice cream when the wind picked up. I remember thinking we didn’t have to leave yet because the storm might pass right over us.

When thunder rumbled in the distance, G, H, and I left.

We escaped to the safety of the car moments before the rain pelted the windshield. G and H shrieked during the entire three minute car ride home and asked if we’d be hit by lightning. I affirmatively told them no and gave some explanation about rubber tires that I think is true, but, honestly, I’m not sure.

When Matt texted me, around 7, that he was leaving work I told him to drive safe and find the windshield wipers in his new car before he got on the road. He told me it wasn’t even raining by him yet.

Around 8:45, I texted him: Make MRI appointment for August 16 in the morning. I can only assume we were sitting next to each other on the couch when I sent him that text message, and it was less a command and more of a reminder, a message he’d leave unread until he picked up his phone in the morning. On July 17, 2017, Matt was still scheduling his own appointments.

Aside from that single MRI reminder text, nothing brain cancer related comes to mind in the story of one year ago today. (Except a somewhat obvious metaphor involving brain cancer and watching an oncoming storm approach, hoping it’ll pass right over us.)

Looking through our emails, mine and Matt’s, I can tell that Matt was busy at work. We didn’t email each other much and our texts are mostly, somewhat, administrative.

So, I started scrolling back through my phone, I found a catalogue of emails Matt sent me over the years with nothing in the message but “Good morning. How’s your day going?” or sometimes “Crazy day here, I started writing this email two hours ago.” Sometimes the emails would be timestamped by 8:45 in the morning, bare minutes after arriving at work.

I didn’t do a thorough search, but I scrolled long enough to realize that in 2016 and 2017, emails like that don’t exist, or if they do, they are few and far between.

At first, the absence of those emails broke my heart a little and my mind instantly went to blaming the brain cancer. It stole away the man I married, the one who sent me emails just for fun twenty minutes after he left for work in the morning. But then, practicality set in. Brain cancer did take parts of Matt, but to blame only brain cancer is to ignore half the story. Matt was one month into working a business that was evolving in a thousand different ways. He was busy in an entirely new way that required every moment of his attention. And I wasn’t sitting around waiting for him to email like I had been when G and H were babies and I was stuck home waiting for nap time to be over. We were still emailing (or texting) all day, only rarely about nothing. We’d both changed, together.

The key word is together.

When Matt and I became serious, at some point after the first “I love you” and before moving in together, Matt told me he never understood why his dad would always get in the car and instantly call his wife (Matt’s mom) who he was driving home to see. Matt would tell me that as a kid/teenager/young adult he didn’t understand the impulse to call someone who you’d just left. On the day he told me this story, he said (and I remember because it made me infinitely happy), that now he gets it because he keeps picking up the phone to call me.

G and H won’t have the experience of seeing their dad call their mom the way Matt saw his parents. But they’ll have this, a blog that is possible because their parents emailed and texted, exchanged funny bitmojis and memes in a way that probably kept the phone companies in business. The content changed from light and nothing to heavy and something, but the desire to share all of it with each other never did.

The hope a year ago today is the same hope that was present every day, even before brain cancer. It’s the hope and simple joy of marrying someone who you want to call on your way home to them. The hope of marrying someone with whom you could weather the storm. (Sorry, I actually couldn’t resist that metaphor.)

July 16, 2017: A Familiar Story

The story of July 16, 2017 is nearly identical to the story of July 15, 2017. G had a birthday party and this time, H tagged along. Matt spent the afternoon determined to finish building the basketball hoop. Instead of having company over for dinner, we went out to meet Matt’s parents.

A friend asked how Matt was doing and I texted this response: He’s okay. I always notice things but so minor that I doubt anyone else would and I doubt means anything new either way.

The story from one day to the next remains unchanged. That duality we lived with, living our lives as if nothing was changing while acknowledging the fluttery anxiety that everything was slowly changing, remains constant. As does the hope for a better tomorrow, a clear MRI, and a miracle cure.

So, if copying and pasting yesterday’s post isn’t an option, what to write?

Every weekend, I run into the same issue. The pace of the story slows down because the pace of our days slowed down. And sometimes that slow pace bled into the weekdays, particularly in the days between doctor appointments or obvious shifts in symptoms. When I started this blog, I thought once I reached the days in July, I’d definitely have something new to write about everyday. But, as it turns out, that’s not the case. The worry was ever-present during these days, but in a consistent way, and like yesterday I’m left wondering how to distinguish today’s post.

I didn’t come up with an answer today, which made the heaviness of the yearly commitment sink in. The other day I calculated that I’ve written more than 70,000 words in our story. (Probably close to 80,000, but I don’t want to exaggerate.) That’s enough words to fill a novel. And I still have six and a half months of daily posts remaining. Six and a half months of daily writing about days that might be hard, but hard in the same way from one day to the next, so I will probably struggle with finding something new to say.

I’ve left myself the opening to quit. I’ve given myself the permission to figure out the direction of post-hope without judgment, without focusing on the words should or must.

But, when I sit to write and have nothing to say and consider not writing, I keep coming back to the thought that I don’t want to quit. I want to see if I can do it. It’s the same reason I agreed to run a half marathon in the Fall with my sister-in-law. I never thought I was a runner (I prefer a run-walk-jog-stroll combination), but when she asked me to train with her, I agreed. I wanted to see whether I could do this thing that I have always said I could not do.

In post-hope, the pattern seems to be knowing it might be too hard, but wanting to prove to myself that I can do this thing that feels heavy and impossible. It seems to be—if I drill down to the heart of choosing not to quit—wanting to hope I can run and write, even though it’s post-hope now.

Which is a statement that brings in a tidal wave of grief, and makes me instantly want to stop and pull back. Because wanting to hope I can run and write feels like a betrayal, like I’m writing a new story without Matt. And I don’t really want to write a story without Matt in it. I don’t even know if I can.

And yet, I’m writing and running and living a new story every day. It’s the duality I’m struggling with at the moment. How can I want nothing to do with a new story and yet choose, every morning, to keep writing and running?

I’ve written before that every and any thought is met with an equal contradictory thought in the world of brain cancer. Apparently, that remains true in post-hope. So the answer may be simply the same as it was a year ago today. Write and run and acknowledge the fluttery anxiety that everything has (not so slowly) changed. Give permission to fail, but also, give permission to keep choosing not to quit.

Let the duality exist. And keep hoping.

July 15, 2017: Does It Matter?

July 15, 2017 was another quiet Saturday. In the morning, Matt took H for a haircut, followed by lunch and errands. I took G to a birthday party. That afternoon, we invited over another family and had a barbecue at our home.

I vaguely remember the afternoon. Matt was determined to set up the basketball hoop that he’d bought the week before. I remember feeling slightly irritated that he was so single-mindedly focused on setting up this basketball hoop, even though we had company over. He even recruited the other husband to help him build a part of the hoop.

If I was nitpicking back then—which I was, all the time—I would have noted that single-mindedness. I might have had an internal panic attack when Matt put a part together the wrong way or when Matt’s unshakeable focus had him send our friend to pick up his own tool set. I would have paid attention to how it wasn’t wrong to want to set up the basketball hoop, but how the timing and the energy of his focus felt strange. I would have taken these mental notes and then done nothing with them.

Because how could I explain to a doctor that Matt’s energy felt off? How could I tell a nurse that the Matt I married would have enjoyed the afternoon and built the hoop later, especially when I couldn’t even be sure if that was true? Maybe even if brain cancer never entered our lives, he would have spent the afternoon steadfastly determined to build that basketball hoop and I would have spent the afternoon wishing he’d be a better host.

As is so often the case, I still do not know whether Matt’s inflexible focus was a result of a brain tumor impacting his thought process or simply a manifestation of his desire to build something for G and H. The question always becomes: what was tumor and what was Matt?

I’ve told a version of this same story before, too many times, probably. The only way I know how to explain the experience of watching brain cancer steal away a family member, a spouse, is through examples. But, as a writer and a reader, I know that simply saying the same thing again and again adds words but not context. And words without context does not make for a dynamic read. So I thought for a long time about what distinguished today’s story from other similar days when I noticed a minor, clinically insignificant change in Matt.

The basketball hoop. Because though I think of the worry, the anxiety that swelled in response to Matt’s single-mindedness, when I look at that basketball hoop, G doesn’t. She looks at that hoop and thinks of it as the last thing her daddy built for her. (To which H responds, he built it for us. And now they are both planning to be famous basketball players, among a handful of other big career dreams.)

And I realized today’s post includes a challenge that other posts have not: how to write about my memory of this day without staining the memory for G and H? How to tell my truth, because that’s all I can tell, without rubbing the shine off G and H’s memory?

I think the best way to share my memory, while preserving theirs, is to ask this final question: does it matter? Does it matter whether his single-mindedness was tumor or not?

The answer, very obviously, is no. It doesn’t matter. Because Matt did finish building the basketball hoop for G (and H) over that weekend. And he did encourage them to play basketball. And they do have fun memories out on the driveway.

And whether we were in a down cycle, an upswing, or on flat land on July 15, 2017, what matters is that Matt’s focus was building something for G and H. The takeaway from the day is even if the tumor did cause Matt’s single-mindedness, his mind was always turned toward them.

I hope by the end of this story, even after reading the worst days, they always know that, and their memories will never lose the shine.

July 14, 2017: Renegotiating Relationships

Thanks to the photos saved in my phone I remember that one year ago I went to G’s cheer competition at camp. The text messages remind me that afterward, G, H, and I spent the afternoon with my cousin who was visiting from out of town. My imperfect memory is the sole reminder that on the morning of July 14th, Matt and I met with financial advisors to discuss unpleasant, but necessary matters—guardianship for the kids and retirement plans, etc.—and Matt said something like: well, what if I get hit by a bus.

Our latest disastrous MRI did not prompt this meeting. We were not “getting our affairs in order” as Sloan had suggested a year prior. We were simply checking off the list of to-dos like any other responsible couple.

But I remember the zing of heat down my spine when Matt spoke these words in relation to future planning. After Matt’s diagnosis, he and I very carefully, very purposefully, never got anywhere near the topic of what if he wasn’t here. Call it hope or denial or a fear of inviting in bad energy, but we simply didn’t.

I remember I turned to him and said (something like): don’t even think it.

But before his diagnosis, Matt often used this bus phrase, mostly as a way to encourage me to learn the log-in for our bank account or pay attention to the mortgage or utility bills. Matt would tell me that I should know all the administrative minutiae of daily life in the suburbs. I’d shrug, flash him my sweetest smile, and tell him I didn’t need to know because he was so good at knowing it all. He’d say, well, what if I get hit by a bus or something. I would tell him, well don’t get hit by a bus, and return to dreaming up fictional characters with fictional problems to be resolved with fictional happily ever afters.

It was never that I was incapable of learning the log-in or paying attention to the mortgage. (As proof, in the years Matt and I dated I’d applied, gotten accepted, and graduated law school with Order of the Coif honors.)   It was always just that I trusted Matt more than I trusted myself.

Maybe because I met Matt when I was twenty-two. Maybe because Matt had the take charge personality and I didn’t. Or, maybe he was simply better at making it look like he knew what he was doing. Whatever the reason, before brain cancer, Matt dealt with our paperwork for mortgages and car insurance and wills. We talked about all our big life decisions, but ultimately Matt steered the direction of our lives. And we were both happy with this dynamic.

I’ve written more than a handful of times that the worst days are coming. But I’m not sure when I write that what visual those words conjure for anyone reading along. I suspect an image of a hospital room comes to mind first. Maybe, following that image, comes another of an adult struggling to remember how to use a spoon.

And those are the worst days, without a doubt. But there were other kinds of worst days, when Matt would wire money to the wrong account or forget crucial passwords moments after creating them anew, and he was frustrated and confused and, often, angry at me for not trusting his judgment anymore. And I was terrified and unsure, desperate to want to trust Matt’s judgment and somehow, at the same time, angry that he didn’t trust mine.

And when our friends asked how I was doing, I didn’t have the words to explain what was happening. I didn’t yet know that there was a name for what Matt and I were experiencing.

A year ago today, I didn’t know the phrase “renegotiating relationships.” I actually didn’t learn that phrase until just a few weeks ago when I read an article about the toll caregiving for a brain cancer patient can take on the caregiver. But since I’ve heard that phrase, I can’t stop thinking how accurately it describes the experience, which felt so singular as we were living it.

I thought our worst days were unique to us because of the specific dynamic between Matt and me. But apparently, renegotiating relationships is a universal experience in the world of brain cancer.

In the coming weeks and months, I’ll explore the cruel way brain cancer forced us to renegotiate relationships, an effect of the disease for which we weren’t at all prepared. So for now, I think it’s enough to introduce the topic here—on a post for a day when Matt once again encouraged me to pay attention to how he steered the direction of our lives and I once again chose to believe he’d just be around forever—and add this thought:

When I read the words “renegotiating relationships” I felt a little less alone in our experience, a little less lonely. And I can only hope passing on that phrase to someone reading along will also make her singular experience feel just a little bit less lonely.

I hope it helps.

July 13, 2017: A Family Of Four

Matt and I exchanged four text messages over the course of the day on July 13, 2017. Which, though unusual, is not concerning. Sometimes we just didn’t have all that much to text about because we didn’t have much to discuss. One year ago today, Matt had taken the CCNU, his next Avastin appointment was booked, the furniture for our forever home had been delivered, those pesky bathroom blinds had been installed. Things were as settled as we could hope they’d be while waiting for the next MRI to show us how that third tumor responded to treatment.

If brain cancer was out of the equation, I might almost have been worried that things were getting too boring. But brain cancer was in the equation. So hopefully instead of worrying, I relished the unusually quiet day. Truthfully, I don’t remember. Though, I can almost guarantee I spent at least some of the afternoon, while waiting for G and H to come home from camp, on the computer, searching brain cancer forums for someone whose story echoed Matt’s story, someone who’d had three tumors, failed Temodar, but flourished with CCNU.

To write today’s post, I cycled back through the years. I stumbled on more than a handful of emails and photographs, but nothing worth writing about until I reached July 13, 2011, when we were on the verge of yet another life change. Seven years ago today, Matt and I announced to the world (or, more accurately, to Facebook) that G was going to be a big sister. Seven years ago, we announced that we would soon be a family of four.

When Matt and I first got engaged, first started talking about the kind of family we would want, Matt told me he wanted five kids. I told him no. (Emphatically told him no.) I wanted only two kids. He said let’s see what happens. Then, in 2010, we had G (and I’ve shared her birth story in a post on April 29). After G was born, Matt agreed that maybe he only wanted three kids. I told him no. (With the same emphasis.) Then we had H, and in the delivery room, moments after officially becoming a father of two, Matt agreed: Yep, we’re done.

That’s a story Matt and I liked to tell often. And—with utmost modesty—I can admit that we were excellent at telling this story, each knowing our respective lines, where to interrupt and where to flash a mischievous grin.

H was (very  much) wanted, though not exactly planned. G was only a year old when I woke up one morning and told Matt that I thought I was pregnant. He quirked his head, looked at me, and said, “Oh man, you are.” Two weeks later, I took a test to confirm the truth we both somehow already knew.

Nine months later, H was born.

The other day I visited the hospital in which H was born. It was also the hospital in which Matt had brain surgery and the one in which he spent most of his September. Needless to say, driving into the parking lot, walking through the doors, passing the same personnel, brought back vivid memories. Memories I have shared and plan to share as part of our story. Memories that steal the light from a room.

But, as I sat visiting my nephew, the third nephew born since February 3rd (and yes, the heartbreak associated with that statement dips into unimaginable depths), I realized I’d let all the bad memories at this hospital shove out all the good memories. I’d forgotten that H was born at this hospital. I’d forgotten that once I’d walked down those same hallways, with a swollen belly, Matt by my side, joking that it felt as if we were checking in to a hotel. (Scheduled c-sections leave very little room for dramatic entrances.) I’d forgotten that once I’d wandered through that parking lot, with Matt and a baby in a carseat, trying to help Matt remember where he’d parked the car that morning.

I don’t know why the bad memories are easier to recall. There must be some reason that those worst days come to the surface of consciousness so much faster than the good days, the days like July 13, 2011 and July 13, 2017. But what I’ve learned is that for every bad memory that threatens to pull me into the darkness, a good memory will push its way through. Because the good memories are, maybe scrappier, maybe a little less vivid, but just as determined to rise to the surface, if I’m willing to give them a chance.

I suspect in the long run, the good memories may even outlive the bad memories, though that’s only a guess.

But while I’m making guesses, I’m guessing, also, that facing the bad memories will be worth it in the long run, too. Because if I hadn’t faced those bad memories, risked a step into that darkness, I wouldn’t have made the space to make a new memory with my newest little nephew.


Blurry because we couldn’t get a 16-month-old G to sit still.

July 12, 2017: Very Encouraging

One year ago today, Matt woke up with another headache. That panicky, fluttery feeling in the pit of my stomach was back. But this time, Matt went to work without taking an Extra Strength Tylenol and the headache went away on its own by 9:07 a.m. Or, more accurately, when I asked Matt how he was feeling, he said: pretty good. I didn’t take anything either.

To which I responded: very encouraging.

Because, the obvious, rational, and logical conclusion that I came to was that the CCNU must already be working. If yesterday Matt needed a Tylenol to control his headache and today he didn’t, the chemotherapy must already be helping him.

I write often how I overanalyzed every text message Matt sent and stressed over every opportunity for a joke Matt missed. I’m reminded today that I overanalyzed in the opposite direction in the exact same way. If a headache lasted for a shorter time than the time before, if he needed less pain medication today as compared to yesterday, I assumed that things were turning around, that the next upswing was just around the corner. I’m not sure if that’s hope or positive thinking or simply a mechanism of survival.

Two years ago today, the story is more than a headache that went away on its own. Matt began a six week course of radiation on July 12, 2016. I sat in the waiting room that first day as Matt was brought into the back by a technician. I have a visual of what it must have been like, but I don’t know for sure. I can’t know. I never went behind the closed doors. My story started and ended in the waiting room.

But I can tell Matt’s story here. Because though we avoided many topics, we talked about this six week course of radiation often. The first step was to be fitted with a mask that would be used to keep his head in the same position from visit to visit. Matt was fitted for a mask the day after he’d had brain surgery. Afterward, he told me the experience had been horrible. He said he’d never been claustrophobic before, but inside the mask, he wasn’t sure how to breathe or where to look. I remember him worrying that the six weeks of treatment would be impossible.

And then the phone call with the radiation oncologist at Morristown happened and I told Matt we could not go back to that woman for treatment.

For me—because I truly do not think Matt was as bothered by the radiation oncologist’s outlook as I was—Matt agreed not to go back to the radiologist at Morristown. For me, Matt agreed to be fitted for a second mask to be used at Hackensack’s radiology center. For me.

Luckily, (luckily, because the lingering guilt would be crushing) the second fitting was not as traumatizing. Matt said he felt less claustrophobic and his breathing came easily now that he knew what to expect. When he went in for the first blast of radiation on July 12, 2016, he was no longer afraid that the experience would be impossible. And it wasn’t.

Each radiation appointment lasted about thirty minutes. Only about ten of those minutes were spent receiving radiation in the machine. Matt used to say it was his ten minute early evening nap-meditation, which he even somewhat (kinda, sorta) enjoyed. Most of the time, Matt drove himself to radiation after work, and then drove himself home. It was exactly as the neurosurgeon had said it would be that afternoon on the plastic chairs in the surgical waiting room (June 8): most people respond well to the treatment and our life wouldn’t change.

It was all very encouraging.

Both in 2016 and 2017, after the workday, after camp, we made an effort to take a family walk around the neighborhood, as recommended by Matt’s doctors. Both in 2016 and 2017, we found reasons to look beyond all the possible terrors and say: very encouraging.


Example of the mask Matt wore during radiation to keep his head in place.