June 20, 2017: Missing Us

School was officially out for the summer on June 20, 2017. I took G and H to the lake, which every year hosts a school’s over party for kids, and Matt went to work. In the late afternoon, I asked him to come meet me at the lake and he had a few legitimate reasons why he wouldn’t come: he was wearing work clothes, he hadn’t eaten dinner yet, he wanted to fit in an aerobic walk around the neighborhood.

I didn’t push him further, but I felt a familiar pinch of worry. Matt wasn’t mixing up words or struggling to read or forgetting how to use a spoon; I wasn’t worried that he was symptomatic. But more and more frequently, Matt preferred not to hang out in big groups. More often than not, he avoided the big social gatherings where he’d be surrounded by friends, acquaintances, and strangers. Which wasn’t a detail that I was panicking about, but I also wasn’t ignoring this behavior that was so unlike Matt. Pre-cancer Matt, anyway.

It never once occurred to me that a tumor might be growing (spoiler alert: it was) or the swelling might be returning (it wasn’t). My pinch of worry was grounded in something much more practical: the fear that, despite his confidence, despite his hope, the treatments and the setbacks and the statistics were dragging his spirits down. I was worried that he felt out of place because he couldn’t laugh and drink beer like the other guys, safe in the knowledge that chances were, his tomorrow wouldn’t be too different from his today.

My heart broke to think he might be feeling even a little discouraged, because the Matt I married was never discouraged. I felt helpless watching him pull away from the person he was, the guy who wanted to throw the huge party and rally his friends to go out at night and watch basketball. I wanted Matt to want to meet me at the lake, like he used to want to. I wanted him to want to grab a beer with the guys and joke and talk sports. I wanted all of that for him, but I also wanted it for me. Because I was already starting to miss the Matt I married.

And maybe that was too much to want. Neither of us could be the person we were before we heard the word Glioblastoma. I couldn’t go back to not overanalyzing his every decision and comparing him to some memory I had of the person he was. I couldn’t go back to not typing the words GBM and Polio into Google and hoping for a new article that might illuminate exactly what to expect next. We were both changed.

Because the real truth is, I was starting to miss Matt, but more than that, I was starting to miss us, the pre-cancer us, the one that would never return, even if Matt was cured. Not exactly, anyway.

A year removed, I still don’t know if Matt’s reluctance to attend big social gatherings was due to a tumor pushing on a particular spot in his brain, a treatment or surgical side effect, actual low spirits, or simply my own imagination reading too intensely into every decision Matt made. Maybe even if brain cancer never entered our lives, Matt wouldn’t have wanted to go to the lake.

Later in this story, when Matt’s personality unmistakably changes, it’s easier to blame brain cancer. But in these days, when the only symptoms were micro-personality shifts and the changes could just as easily be attributable to life and stress and growing older, there’s no way to know. 

The cruelty of brain cancer is sometimes there, in the not knowing, in the wanting of the pre-GBM life that maybe would never have existed, anyway.

June 19, 2017: Good Timing

The fight against brain cancer was almost a distant memory on June 19, 2017. While we could never truly forget the life saving battle we were waging, some days that battle became background to real life.

A year ago today, the battle Matt and I were waging in the foreground was against H’s temper tantrums. And the only text I sent Matt was a picture of H eating a well-balanced dinner. (The theory being his all-pasta-all-the-time diet might be causing the temper tantrums. The healthy eating plan didn’t last that long for H.) Matt responded: that’s my boy.

Two years prior, on June 19, 2016, brain cancer was also a battle that became background to real life. Which seems unthinkable. Days prior we’d met with a neuro-oncologist and taken those first uncertain steps into a strange new world. How could brain cancer already be in the background?

I can say, with near certain confidence, that there’s never a good time to receive a brain cancer diagnosis. Regardless of the day of the week or the stage in life, the words brain cancer, brain tumor, and Glioblastoma, will devastate. Matt’s diagnosis came on a Wednesday, 11 days before his sister’s wedding. While we were researching doctors and side effects of Dexamethasone, we were also buying wedding shoes and finding matching hats for the groomsmen so Matt could hide his scar if he wanted. There was a moment in the hospital, when Matt’s neurosurgeon had hinted that Matt shouldn’t go to the wedding, and Matt shook his head and said no. He would not miss this wedding.

On June 19, 2016, the pathology report was not yet in, a fact that even the doctors found unusual. On June 19, 2016, the only doctor we’d met with was at Hackensack, and without the benefit of a pathology report, he took a look at Matt—his youth, his humor, his intelligence—and said he believed Matt should be okay. On June 19, 2016, Matt went to his sister’s wedding, gave a speech, and shook hands with all the guests. Whenever anyone asked after his health, he told them he was fine, feeling fine and going to be fine. The doctor said so. It was the truth we believed without hesitation that allowed us to push brain cancer to the background.

I would never call us lucky. No part of what happened to Matt was lucky. Too often, we found ourselves throwing our hands up in the air and wondering why we couldn’t just catch a break already. But in looking back on this day two years ago, we were fortunate in one way. Maybe call it good timing, rather than luck, but two years ago today, Matt and I went to his sister’s wedding and enjoyed the night without the dark cloud of a brain cancer diagnosis hanging over us.   

In Matt’s version of the story, he always mentioned this bit of good timing. He always told the story of his diagnosis adding in the detail that he went to his sister’s wedding believing his tumor was nothing but a bump on the road to our happily ever after. Overall, this detail was irrelevant to his diagnosis story (as was the kilt detail)—and I often wanted him to stick to the facts when speaking to the doctors—but he never failed to mention how glad he felt that the pathology report was late and he had the chance to go to the wedding and tell his family and friends that the doctor said he’d be fine. I can’t know why, but I suspect he brought up this detail because he felt grateful that on June 19, 2016, thanks to good timing, he could put brain cancer into the background for a night. He felt grateful he could enjoy this event that meant so much to him and set everyone’s mind at ease.

There’s a lesson in there, about gratitude and appreciating the little things, the unexpected blessing of good timing. But I look back and remember the way Matt told his story, adding in this detail about his sister’s wedding, which inevitably made even the sternest nurse smile, and see only this lesson: every jagged edged story has a soft edge somewhere, and it’s always worth the effort to slow down and find it.

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On our way to celebrate!

June 18, 2017: Complicated Relationships

June 18, 2017 was not a usual Father’s Day for us. Most Father’s Days since G was born, Matt played golf with his dad in the morning and we hosted a Father’s Day barbecue for family in our backyard in the evening. Most Father’s Days ended with sports on the television in the living room and at least one person napping on the couch. But last year was different. I remember very little of the specifics of the day. I know Matt’s parents were away and we spent a quiet day at the lake, just the four of us. A text message reminds me that I gave Matt a card and he managed to thank me by complimenting himself in the most Matt way possible. Without remembering details, I remember it was an easy, uncomplicated day.

Complicated is a word I’ve often used with Father’s Day. For nearly thirty years, I’ve had a complicated relationship with this day that celebrates dads. Mostly, that’s due to my own absent father. It’s not something I talk about often, mostly because it’s not something that I think about often, but it’s relevant context for today’s story in this way.

When G was born, when Matt became a father, Father’s Day became uncomplicated for me for two reasons. One, it was a quiet joy to pour my energy into making the day special for Matt, to turn the focus of the day onto what I had rather than what I didn’t. And two, I felt nothing but grateful to know that, with Matt as their father, my children would always be able to celebrate the day the way it should be, without complicated feelings.

Of course, I never factored in brain cancer.

This year, the kids and I woke up and we didn’t have anyone to give the Father’s Day cards to. We didn’t plan a huge family barbecue. Thanks to checking Facebook—despite all the advice to stay away—I was struck again by the realization that G will never post a photo of Matt walking her down the aisle at her wedding and H will never get to introduce his son to his father. The day is not uncomplicated anymore.

The kids and I laid low, avoiding Hallmark cards and restaurants where people might be celebrating Father’s Day, but we couldn’t escape our loss; it was there, in a dozen different ways, a dozen different variations of didn’t and never. And yet, H spent the day determined to learn how to swim, G spent the day showing off her new found confidence in the pool. Yes, they went into Matt’s closet and put on his shirts and hats and argued over who missed him more, but that didn’t stop them from living their day.

I warned that certain themes will appear again and again. Firsts and lasts is one such theme. A year ago today we celebrated our last uncomplicated Father’s Day and I wish I paid more attention. I wish I remembered more about this last. I wish I wasn’t left hoping that I made Matt’s last Father’s Day day special enough. Lasts always seem to work that way.

Yesterday, we lived our first complicated Father’s Day and I woke up afraid because I didn’t know how the day would go. But I’m not waking up afraid today. Because of experience, I know that G and H will wake up today, on the day after Father’s Day, still sad, still hurting, but slightly more prepared to face the next complicated day when it inevitably comes along.

And while I wish with every breath in my body that G and H didn’t have to learn how to be slightly more prepared, my hope is that one day, they will read this story, and their Father’s Day will become a little less complicated. They will see how hard Matt fought against an aggressive brain tumor to stay with them. And maybe knowing that fight, knowing every choice Matt made was in an effort to be with them, will change their relationship with the day. It’ll be sad, always. But maybe less complicated. And maybe, one day, that will be enough to turn the focus of the day onto what they had, rather than what they’d lost.

I hope so, anyway.

 

 

June 17, 2017: New Plans

June 17, 2017 Matt had his first (and possibly only?) tennis match as a member of the lake tennis team. I’d like to say he won, but I don’t understand tennis scoring so the numbers he texted don’t mean anything to me. Afterward, we had plans to meet friends at the lake. But then the rain poured down.

We ran to the car and sat there, hoping the rain was nothing but a passing shower. But minutes ticked by and the rain didn’t let up by a drop. So, we moved our plans indoors.

Seated with our friends around the kitchen table, the rain ruining our fun day out in the sun, the subject of Matt’s fast approaching 40th birthday came up. Matt and I had been tossing ideas back and forth for months. At first, we considered throwing a huge party and inviting all our friends, new and old. Then the second tumor was discovered in February and we narrowed the guest list from all our friends to most of our friends. Then April’s swelling happened and we narrowed the guest list even further. By June 17, Matt was less interested in any kind of party. Our friends mentioned a trip to Napa, and Matt and I were sold instantly. We’d gone once before, years ago, and it was one of our favorite vacations; we’d always wanted to go again. So, we scrapped all the tentative party plans and turned our focus to planning a trip to Napa.

That evening, when the rain stopped, we went to another party at a friend’s house. H had a very public meltdown. So we left sooner than expected.

I remember June 17, 2017 well. The rain, the decision to book a trip to Napa, and the meltdown to end our night. And yet, I wrote the story and feel completely disconnected from the events. In news that will surprise no one reading along, I’m struggling to tell today’s story in a worthwhile way. I’m finding it impossible to put myself back into the mindset of June 17, 2017. Post-hope, June 17, 2018, is too intrusive.

In 2017, today wasn’t Father’s Day, so I don’t have to write that post yet. I don’t think I could today if I had to. Because even though it’s only morning, even though the kids are still sleeping, I can feel the weight of the day pressing in already, muddling my thoughts, silencing my words and ability to find a glimmer of light within a dark tale. To be honest, I’ve been feeling the weight of this day press in for weeks, for months. I’ve watched this date creep closer and closer on the calendar and hoped some brilliant morsel of inspiration would strike and I’d know how to protect G, H, and myself from the day.

That brilliant inspiration never arrived. G said yesterday that she’s going to spend the day “crying her eyes out.” H spent yesterday morning alternating between acting up and curling into a ball on my lap. I spent the day telling myself if I prepared enough for the heartache, it wouldn’t hurt that bad. But I’m waking up today simply afraid. Afraid of the hurt and the silence at the breakfast table and the way G and H will be pummeled by the reminder of what they do not have. Afraid the day will be too much for all of us.

I write a lot about where we found hope, how we clung to hope. But in telling the story of one year ago today, against the backdrop of a morning when I hoped for inspiration that never appeared, I see only the reminder that some days the rain didn’t let up. Some days life wore us down and we didn’t have the energy to throw the huge party we’d planned.

Looking back at one year ago today, I’m reminded that even in our year of hope, some days we had to scrap our plans and find a new path.

That might seem like the opposite of my usual message at first, but it’s not. Because it was hope that gave us the resilience to change course so often. It was hope that let us believe Matt would be healthy enough to take that trip. And it is hope this morning that is steering me toward a new plan, one that acknowledges I can’t protect G and H from the pain, gives permission for the day to simply be too much, and resolves to nevertheless find a way to smile and celebrate the person we had.

I ended my May 13, 2018 post with a message of hope for anyone following along this post-hope journey who was struggling with Mother’s Day. I’m repeating that message today for Father’s Day and adding this note: hope can survive a bad day. Hope can withstand the weight pressing in. Hope is tougher than it sounds.

June 16, 2017: The Sale

June 16, 2017 is a day I have bookmarked in my calendar. I knew the story of this day without looking at text messages or emails or pictures. I thought it would be easy to write today. But when I sat down, I couldn’t think of how to start this post, where to begin this particular narrative.

So I stared at the screen for a while. Scrolled through Facebook for even longer. And typed and deleted a hundred different introductory sentences.

Nothing felt true, and ultimately, I think that’s because the only words in my head about today are words from post-hope. Which maybe means the only way to begin the story of this day is through the ending. So here it is.

A lot of my grief is focused on what I lost. What the kids lost, what Matt’s family and friends lost. So much of my grieving is focused on what we–those who are left behind– are missing. That punchline at the end of a story, that voice calling to talk fantasy football trade, that smile promising everything will be okay. But in the story of today, the ache in my chest belongs completely to what Matt lost. What Matt is missing. The dream he never got to live.

A year ago today, hours after H’s preschool career ended with an adorable graduation, Matt and his father officially sold their company. They closed an 85 year old chapter of the family’s history. And Matt met this day of endings with nothing but celebration.

I’ve written a little about this before, mentioned how Matt and his father decided to sell the company after the truth of Matt’s diagnosis settled in, and then told the story of how, as hope grew, Matt began to see a future for himself working alongside the buyers, growing the company in the exact way he’d always dreamed. I want to write that he was excited for this next phase of his life, but the word excited feels insufficient. He was so much more than excited. He was on the cusp of living a dream.

Then September happened. Matt’s health declined faster than we ever could have imagined and the dream was savagely ripped away.

And I’m left with nothing but the certainty that he would have loved going into work everyday. He would have loved the business meetings and data analysis methods and new employees powering the family business into the exact direction he dreamed. He would have really loved coming home every night to pace the living room, exhausted but exuberant, while giving me a play-by-play of his day.

The breadth of his loss, the ache in saying “he would have,” shatters me in a way that defies words.

But since words are how I cope (and I’ve committed to daily posts), I looked for another story from this day and found June 16, 2016. Matt’s first official day as a cancer patient. Our first meeting with a neuro-oncologist at Hackensack. The pathology report was not yet available. We could discuss nothing but generalities, which was enough to shut the door on our pre-cancer life. And still, we both walked out of that appointment feeling invincible.

And in that story, I found my introductory sentence to this post.

June 16, 2016 was the beginning of our fight for a miracle. A year later, June 16, 2017 was the beginning of Matt’s dream come true. June 16, a day that could have been overwhelmed by endings, is marked in my memory as a day of hope-filled beginnings.

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June 15, 2017: Flashback #10…One Day Away

June 15, 2017 was one more day closer to the sale of the company. One more day closer to H’s graduation. One more day closer to an appointment that, we hoped, would tell us Matt was cured. It sincerely felt like all the rushing and anxiety and drama of the last year was winding down.

Two years ago today, the day was similarly quiet, but all the rushing and anxiety and drama was only beginning to wind up. We were one day away from Matt’s very first appointment with a neuro-oncologist. One day away from officially entering the fight against brain cancer. One day away from learning how it felt to sit in a doctor’s office and wait for a near stranger to tell us our fate.

On June 15, 2016, Matt was home from work and banned from electronics (phone, iPad, and television) on neurosurgeon’s orders. He didn’t quite obey for a dozen reasons, one of which was because of a choice I’d made a week earlier.

On the day of Matt’s surgery, while Matt was in the operating room and his phone was in my possession for safekeeping, I made a decision to email his close friends and let them know what was happening. Up until this point, most people in Matt’s life had no idea he was in the hospital, let alone undergoing brain surgery. And I told myself that he needed people; he needed a reserve of positive thoughts sent his way. But looking back, I also remember hesitating. I remember asking myself if I was doing this because I thought Matt needed support or because I thought I needed support.

I pressed send without truly resolving that question for myself.

The next day, when Matt awoke from the brain surgery, he was furious with me for sending an email to his friends. Very honestly, I don’t quite remember why he was so angry. Possibly, he hadn’t processed the information himself so he wasn’t ready to share the news or discuss it. (Fair.) Possibly, some part of him–the part that didn’t realize the gravity of the situation–thought he could just sweep this entire ordeal under the rug and save the story for a funny anecdote at some ugly sweater party months down the road. (Denial.) Possibly, the cocktail of drugs he was on heightened all his reactions. (That Dexamethasone.) Or, maybe, he wanted to control his own narrative, and who could blame him for that?

I remember feeling awful for sending that email, for doing anything to make Matt upset. I remember feeling—somewhat, completely—selfish because maybe I’d sent an email simply because I needed support.

Then the responses started coming in. Matt’s friends reaching out to him, sending a note to make him smile, texting an inappropriate GIF to make him laugh, bringing up old memories to remind him that he had people spread throughout the world that would support him no matter where his fight led him. He grumbled, constantly, about having to respond to so many texts and emails, but he did so with a smile on his face and with a chuckle as he thought of an eye-roll-worthy joke to include in each personal reply.

I truly believe those messages, that outpouring of support he received in those first few days–and everyday after–, gave him something to smile about daily. And that daily ounce of joy helped keep him standing when the weight of it all crashed down. Which is all to say, I’m sorry I made him upset back then, but I don’t look back and regret that choice, even if it was somewhat completely selfish.

So back to June 15, 2016, when Matt was supposed to be avoiding screens. He spent some time answering emails that had been written in response to the email he didn’t want me to send. He ended the note to his friend with this line, which summarizes his unfaltering positive outlook more succinctly than I’ve been able to in 83 posts: “don’t know everything but I’m confident I’ll be ok.”

Looking back, re-reading that email, I actually don’t see hope. I think there might be something stronger than hope hidden within the words of his email. Some tangle of faith and love and determination that buoyed him even when hope failed me.

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June 14, 2017: Flashback #9…A Phone Call

The story on June 14, 2017 is quiet. The closing date for the sale of the company was fast approaching. The end of H’s preschool career was days away. G had yet another awards ceremony, this time for softball. We had nothing to do but wait for the MRI in July, and, like I said yesterday, we weren’t even particularly anxious about the impending appointment.

We had quiet. We had calm. We had everything we didn’t have on June 14, 2016, the day Hackensack received Matt’s medical records and I answered a phone call from a number that I recognized as belonging to a doctor’s office. The phone call is one I think about often. The numb feeling that came over my body. The way I reacted. The precedent that phone call set for so many future interactions.

To explain why this phone call was significant, I’ll need to backtrack a little and explain something I glossed over in previous flashbacks. Back when the MRI revealed the tumor and I went home to research, I learned that brain cancer comes in four possible grades. (Not surprisingly, they are numbered Grade 1-4). If my understanding was correct (and if my memory is still correct) Grades 1 and 2 are slow growing tumors and largely benign (although even a benign tumor can cause distressing symptoms). Grade 3 signifies an anaplastic astrocytoma, which is cancerous, and certainly dangerous, but slower growing and linked to a better prognosis than a Grade 4, a Glioblastoma.

On June 14, 2016, we knew that Matt’s tumor was cancerous. The neurosurgeon, whose expertise we trusted implicitly, had told us he believed the tumor was cancerous. The only remaining question for the pathology report to answer was: Grade 3 or Grade 4. Distress or devastation? On June 14th, nearly a week after the surgery, we didn’t have an answer yet. The report was delayed and we were left teetering on the brink of hope.

And then my phone rang. The woman on the other end of the line identified herself as the radiation oncologist we’d met while Matt was in the hospital. She told me the tumor was a confirmed Grade 4 and that Matt had eighteen months at best. I remember exactly where I stood in the backyard. I remember exactly how the air left my lungs and my stomach dropped. When I asked her if his odds were better because he was young, and mentioned that the neurosurgeon had seemed somewhat positive, she said no, eighteen months. She said there was very little hope. She urged me to make an appointment with her as soon as possible to get him into radiation so he could have the best version of his eighteen months.

Somehow I got off the phone with her and walked back into the house, fighting back tears. Somehow I finished making the green detoxifying juice I’d been in the middle of making for Matt before my phone rang, and set it on the table beside where he rested on the couch. Somehow, I didn’t tell him about the phone call I’d just received.

I’ve mentioned some of this in the past. How Matt didn’t research a single thing about brain cancer before his first doctor’s appointment so he had no idea what a Grade 4 result would mean. How, I hid the truth from him at first and he was upset with me.

This was the moment that I could have told him and I chose not to. I could not find the strength or the courage to repeat that awful truth to my husband. Instead, I flipped from devastated to furious and called the neurosurgeon’s office. Why didn’t they call me with the results?

The answer: the results weren’t in. The pathology report hadn’t been completed yet. They had no idea why or how the radiation oncologist called me with results. They said they would never give results over the phone. They were as perplexed and angry as I was.

When it was time for Matt to get radiation, I wouldn’t go to her. I refused to ever step into her office again.

Thinking about this phone call, the way hope was almost unceremoniously stomped out, still infuriates me. We were only just beginning to truly understand the shape of the fight that would consume our next twenty months, we needed hope wherever we could find it.

Two years ago today, after this phone call, I established a precedent. I viciously shut out anyone—doctor, nurse or otherwise—who didn’t try to find the glimmers of hope in the darkness, no matter how slight or obscure or unreachable they were.

Maybe that was wrong. Maybe we shouldn’t have turned our backs on those who tried to make us look into the darkness rather than above it. But it was the only way we knew to survive. And, as I’ve said before, you do what you can to survive.

June 13, 2017: The Victories

Matt and I didn’t text much on June 13, 2017. He sent me a message in the morning to let me know that the closing date for the sale of his company was nearly set, and then again later in the afternoon to let me know he was going to use the elliptical at home for twenty minutes. Nothing more.

The pictures and emails from a year ago today tell a bigger story—I have a few dozen photos of G at her Daisy moving up ceremony, and handful of emails about H’s upcoming pre-school graduation. But still not particularly relevant to our year in hope.

When I sat down to write today’s post, I assumed I’d see an anxious text to a friend or a screenshot of another article I’d read or something to remind me that Matt and I had turned our thoughts to the next tremendous milestone on the horizon. I didn’t find anything like that. And when I look back on the day and sift through my imperfect memory, I don’t remember being overly worried about the uncertainty in the future, that July MRI.

Why? Denial and naivety are possible explanations that seem to be as ubiquitous as hope in these posts. But I think our lack of concern was grounded in something more practical. (For once?!)

On May 2nd, I wrote about Matt’s first post-polio-infusion MRI. The doctor discussed the tumor, but, in my mind, the severe swelling causing the rapid mental deterioration dominated the doctor’s appointment. That swelling overwhelmed our thoughts and shifted our focus. Rather than fighting the tumor, we were fighting the swelling. Then, when Avastin tamed the swelling, we fought for support from a local doctor. Then, when we found support, we fought for records and scans and reports to be mailed. For six weeks after the May 2nd MRI, the tumor had become secondary to all these other battles.

And on June 13, 2017, it seemed as if we’d won the battle against the swelling; we’d won the battle for Avastin; and we’d certainly won the battle to draw a local doctor to our team. (so…#winning?!) All of that makes me think, possibly, the reason we weren’t nervous about the next MRI was because, for better or worse, we’d lumped the battle against the cancer into all of our triumphs.

After all, as of the May 2nd MRI, the polio virus was acting as promised. It had begun to shrink the tumor. It had activated (over activated?) Matt’s immune system. Very practically, we had every reason to believe that the polio virus was working to destroy the tumor the way it had for those first two patients featured on 60 Minutes, that the treatment was fighting the cancer the way it was supposed to while Matt went about his daily business.

Or, maybe we weren’t overly worried because simply focusing on the small victories kept us from spinning too far into the future and into that dangerous, anxiety-ridden world of what if.

In post-hope, there are battles and triumphs, too. And though the stakes aren’t quite as high (the enemy is a misbehaving paper shredder rather than an aggressive cancer) the uncertainty in the future is just as daunting and it’s somehow harder to ignore the milestones on the horizon (Father’s Day, 10-year wedding anniversary, to name a few). The anxiety around these dates at times swallows my thoughts and I lose countless minutes worrying myself into circles.

Maybe that’s okay in post-hope. Maybe feelings need to be felt and denial isn’t a permanent solution to cancer or grief. But I don’t think it’s wrong to focus on the victories, whether big (taming brain swelling) or small (fixing the paper shredder). I think maybe Matt and I were onto something a year ago today when we focused on the little wins and didn’t let those unknowns stop us from living in the moment. We made it look easy last year. I see this year that it’s not that easy. But it’s very much worth the effort.

June 12, 2017: How Is That Possible?

For ten days in 2017, we had a break. We had easy. We had a local doctor willing to administer Avastin and a treatment plan with the possibility of a cure on the horizon. We could almost let ourselves forget that Matt was diagnosed with an aggressive, terminal disease and pretend everything was fine. Then, June 12, 2017 came along as a gentle reminder that our story wasn’t finished, we were still in the fight of our lives.

June 12, 2017 was one day shy of exactly three weeks since Matt’s last Avastin infusion at Duke. It was his third (and, if we were lucky—which we were not—final) infusion of the black box drug, though his first at Columbia. I found myself, once again, making a need assessment: who needed me more. But this time, my decision to stay with the kids wasn’t difficult and wasn’t mine alone; we both agreed the kids needed me home. G had her first day of cheerleading and H seemed to need the familiarity of a routine (that temper tantrum!). And Matt didn’t need me. He was feeling great, tired from working long hours, but exhilarated about the imminent sale of his company and the new phase he was about to enter.

The doctor’s visit didn’t go smoothly. It didn’t go at all, actually. The plan had been for Matt to see the doctor, check-in with her to make sure she agreed he was doing fine and was healthy enough for Avastin, and then walk over to the other building where the infusions took place.

Matt waited over an hour for the doctor. She never came. Finally, he learned the doctor wasn’t coming—there’d been some mistake in the schedule—and he was sent for the infusion. In the text messages for today, I was more upset than Matt. I asked “How is that possible?” He didn’t seem bothered. He’d spent the hour while he waited productively responding to work emails. He seemed simply thrilled that he arrived at the infusion appointment an hour early and the infusion team took him an hour early.

A year ago today, Matt and I spent more time texting about tennis than we did about anything medical. He’d just found out that he was a part of the lake’s tennis team and he was overjoyed at the thought of playing competitively every week. I remember being overjoyed that Matt seemed interested in returning to the things he once loved. I remember thinking I could see an end to our nightmare on the horizon. That was just a year ago today.

In post-hope, I find myself very rarely asking why. I did, to the point of obsession, particularly after February 3rd. I researched and learned about factories accused of spreading toxic waste not far from where Matt grew up. I blamed his face wash (Cetaphil, which I’d made him stop using years ago), his treatment (both radiation and chemo can cause secondary cancers), and his doctors (who, irrationally or not, I blamed for not checking his spine the very first day he arrived in the ER). Lately though, I’ve stopped asking why. I don’t think there will ever be an answer to why and I can’t continue screaming the question into a vacuum. More frequently, I find myself looking back at where we were one year ago—texting about tennis teams and where in the city he’d go for dinner to avoid rush hour traffic (Dallas BBQ)—and asking, once again, how is that possible.

How did everything change so fast?

Telling the story, slowing down all those moments and hours and days that I didn’t know were limited seems like a good way to understand how. And in a perfect world, when I reach the end of this project, I will have an answer to the question how. I’ll understand how it happened so fast; I won’t be left dizzy and dumbfounded by the speed of it all. But, this is my 80th post and I’m no closer than I was in post one. Which probably means I may not have an answer to how by the end of this project. Slightly discouraging. But maybe not. Maybe it’s simply a gentle reminder that even when the project ends, the story won’t be finished.

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June 11, 2017: Threads of Hope

I started the post for June 11, 2017 the same way I start almost every post: by scrolling through emails and text messages and pictures and trying to find some meaning in the events of the day. Some nights I sit down and panic because I can’t think of one worthwhile thing to say. Some days I sit down to write and the story takes me away from 2017, like it has the last eight posts, to days that may always feel razor sharp in my memory. But then there are days like June 11, when, for whatever reason, I have a record of emails and texts going back eleven years and I can’t decide which topic resonates with me the most.

There’s June 11, 2007, the day after Matt and I bought a dog on a whim because we came across a PetSmart flyer in the mail and we were bored. The lesson we learned: don’t buy a dog without any forethought. Probably always a valuable lesson to share, but I wanted to write about it because one day I think G and H will read this and note how that was our version of a trial run at making our own family (and maybe laugh at their parents’ foolishness.)

Or, June 11, 2014, the day after I finished my very first manuscript—without regard or any real knowledge of pacing, plotting, or character development—and Matt was so proud he bound it, printed it, and encouraged me to send it to everyone, everywhere. When my first agent rejection came 16 days later, Matt pieced together my shattered pride and told me to keep trying because he knew I could succeed. That story is relevant today because, just a few days ago, I received two rejections on a manuscript that I haven’t worked on since before February 3rd. The rejection not only shattered my pride (again), but triggered my grief. Because Matt wasn’t there to pick up the pieces. And because I haven’t kept trying. I have three stories sitting in a file on my desktop (one to edit, one to second draft, one to finish) and I haven’t reached for them, haven’t submitted to agents, because the thought of failing is scarier than ever in post-hope.

Or, June 11, 2016, Matt’s first full day home from the hospital, when I’d promised to take G to a 5K Color Run with her friends. Despite all the stress and uncertainty at home, I couldn’t bring myself to disappoint her, so we went. I remember being in a crowd of smiling, joyful runners splashed with neon pinks and yellows and blues and thinking G and I didn’t belong here. Our world was darker, dimmer, flecked with hope but not bursting with it the way it seemed everyone else’s did. I remember wondering if anyone who didn’t know us would notice that we didn’t fit in. Given the sad news this week, how could the takeaway be anything but we never know the battle a stranger is fighting; we can never know when our neighbor might need an extra ounce of kindness.

Or, June 11, 2017, H’s epic temper tantrum at kiddie tennis, one I doubt anyone who witnessed will soon forget. Whether he blew up (or melted down) because of what he’d witnessed over the last year, or because he was nearing the end of his preschool career and anxious about kindergarten, or because he’s H and he’s always been a handful, I can’t know. I still haven’t figured him out, and everyday I’m struggling to learn patience and compassion and striving to find a way to help him learn to control that anger.

When I started this project, I had no plan other than to start writing, to get the story of what we’d been through out of my head. I knew simply that I could not re-live the story everyday on my own. So, at first glance, today’s post seems off-topic. I didn’t mention brain cancer or Avastin (returning tomorrow!) or Polio. But, I think today’s post is relevant to what this project has become: a way to do a little good with all the bad we’ve been through, a reminder to myself, and hopefully a few others, that there’s always hope to be found. Because in each of these seemingly unrelated days, there’s a thread of hope woven through: hope for a future family, hope for a dream to come true, hope for kindness, and hope that the kids will be okay. And ultimately that is the story I want to share. Our story of hope.