September 20, 2017: Online Theories

One year ago today, Matt was scheduled for an Avastin infusion and we canceled on doctor’s orders. The hemorrhage meant that Matt was not a candidate for Avastin anymore. Matt and I were both relieved to be done with that dangerous black box drug.

But that relief was tempered by the many, many hours I’d spent scouring the Internet, reading the forums and the anecdotes posted by other patients and caregivers. In the forums, the anecdotal evidence suggested that Avastin was dangerous to start.

But even more dangerous to quit.

The theory I’d read that had me most concerned was that after stopping Avastin tumors returned with a vengeance, an almost rebound effect—the tumor comes “back galloping.” I asked Duke about the this theory and they’d told me the study that had first suggested the rebound effect had been debunked. They weren’t concerned about a rebound effect because a rebound effect did not exist. (I’ll return to this theory often between now and February 3rd.)

I chose to trust Duke over the stories I’d read online—after all, you can’t believe everything you read online—and I did not share my fears with Matt. Why?

Partially because I was hoping to prevent an emotional surrender on Matt’s part, as I mentioned yesterday. And partially, because somehow our marriage had undergone its own slow, cruel transition. Somehow, in the weeks between the discovery of the third tumor and September 20, 2017, Matt and I had stopped texting each other funny memes. Matt had stopped texting me random notes throughout the day, asking about my day or letting me know how busy his day was. Sometime in those weeks, we’d transitioned from husband and wife to patient and caregiver.

I’ve written often about grief waves, the way I can sometimes feel them building before a particular date, the way they sometimes linger and my only choice is to hide behind big sunglasses. I don’t know that I’ve ever explained a grief wave, not really. I haven’t wanted to write too much about loss and secondary losses because this is not a grief blog (though Post Hope has crept in with a story line of its own). But in the story of September 20, 2017—in the story of September really—an element of grief exists.

In the hours I’d spent scouring the Internet, I’d read another theory, one I also didn’t share with Matt. This theory was specific to caregivers and even reading it felt like a betrayal. This theory suggested that the days were so difficult not simply because I was busy administering medications and calling doctors and renegotiating our relationship (I’d spent an hour that morning pleading with Matt to stop making calls about our finances without me in the room after I caught him hanging up with the bank and moments later unable to recall the conversation), but because I was also grieving the loss of our old life.

I didn’t want to believe it at the time. I didn’t think it was possible to grieve something I believed would return—eventually. So it’s only in retrospect that I can bring myself to say I was already grieving our old life. Every moment of hope was tinged with nostalgia. I was grateful for all of him that I still had, but I was missing the joy of a meaningful conversation with my best friend. I missed joking with someone who knew how to make me laugh and who I could make laugh, whose questionable sense of humor matched my own.

In Post Hope, my grief is for Matt, and all those little things I’d started grieving more than a year ago.

The cruelty of brain cancer—how early that grief creeps in.

One year ago I didn’t believe it was possible to grieve and hope at the same time. I thought grieving our old life meant I was abandoning hope. In Post Hope, I’ve learned that it is possible to grieve and hope at the same time. I’ve learned that grief and hope do not exist in vacuums separate from anger and fear and love. I’ve learned that you can wish for more moments and still be grateful for every moment you had, even the ones tinged by that early grief.

The duality of Post Hope. Every moment is marked by grief for a life lost and gratitude for a life lived and shared and loved.

September 19, 2017: We Could Do This

September 19, 2017 brought another morning with another terrible headache for Matt. Another morning during which the best thing I could offer Matt for the pain was an Extra Strength Tylenol.

Matt had a conference call scheduled at work. He’d been out of the office for more than a week (first Chicago, then the hospital stay) and out of the loop for at least the few days he’d been in the hospital, but he was determined to be on this conference call.

I remember watching Matt push himself up from the couch and dial in for the conference call. I remember him greeting the others on the call and placing the call on mute so he could listen. I remember the swell of pride and relief I felt as I left Matt to do what he did best—pace and strategize and steer a company into a new, exciting direction—while I snuck out to Bar Method.

In truth, I don’t know that he did more than listen in on the phone call.  But to me, it didn’t matter. The fact that Matt tried, that he stood up from the couch despite the morning’s severe headache was a sign that he wanted to get better, that he was not emotionally surrendering to the cancer. That information was invaluable. I believed—and probably still do believe—that the battle against this aggressive tumor couldn’t be fought without heart and soul and willpower. And Matt’s unwavering belief in our happily ever after was contagious. Maybe that’s slightly different than hope, but it’s just as important a component in understanding how and why we did what we did.

After that swell of optimism, came the crash of reality. The trip we’d planned to Napa was only weeks away and the deadline for a refund was approaching. Matt and I were forced to admit to ourselves—and our friends—that he was not going to be well enough to go on the October trip to Napa that we’d planned for his fortieth birthday. This birthday had already transformed to accommodate Matt’s health—his big party shifted to a small party which shifted into no party and a trip. Now, we had to postpone the celebration altogether. I remember sitting on the deck, the sunshine on our faces, and agreeing we’d go once he was better, once he could spend days walking between wineries and eating and drinking and being himself. We had a new plan, again.

From high to low, and now to the in between. Matt had decided that his back and neck pain must be the result of our old mattress. No doctor had provided us with any other explanation for the severity of the pain. After we called our friend to cancel the trip, Matt decided we should go to a mattress store. I texted a friend afterward and told her that the salesman was definitely—without a doubt—going home to his wife at the end of the day and complaining about the weird couple that took up nearly an hour of his time with nonsense. I remember Matt’s questions failing to make sense, how he repeated the same question with different words though he’d just gotten the answer, how neither the salesman nor I could quite follow some of his questions. I remember also how I didn’t intervene because too often Matt and I found ourselves renegotiating our relationship—changing the control dynamics and growing frustrated with each other as we stepped into roles we didn’t want—and this seemed like a situation in which Matt could play the part he’d always played in our relationship. I sat on a showroom mattress checking literary agents’ Twitter feeds while Matt talked himself and the salesman in circles. Maybe that wasn’t fair to the salesman, but it was important to Matt’s confidence level, to prevent that emotional surrender.

I spent the late afternoon with the kids while Matt rested. G had tennis and then cheerleading practice and pictures. H had a playdate and soccer practice. The long rest while we’d been out of the house rejuvenated Matt. His headache decreased and that night, he read G and H a story before bed.

I remember going to bed (AKA, falling asleep exhausted on the couch) thinking we’d found a new rhythm. Not an enviable rhythm. Not even an easy rhythm, but a rhythm we could manage. I remember thinking we could do this while we waited for things to get better. We were doing this. Two tumors had disappeared, the poliovirus was working its magic on the third, and we were finding a new normal.

September 18, 2017: Analysis Paralysis

Matt didn’t go to work on September 18, 2017. He was still suffering from minor bouts of confusion and in too much pain to be on his feet all day. We (Matt and his parents and I) agreed that he should take it easy for at least a couple of days. Truly rest and heal. He napped and took a trip to the grocery store with me and napped a bit more.

That afternoon, G complained of an earache at school. I made an appointment with the pediatrician and G, H, and I drove there in the late afternoon while Matt rested. The pediatrician confirmed an ear infection and called in a prescription.

When I arrived at the pharmacy, I learned that the prescription was delayed. We went home, ate dinner, and the kids sat on the couch with Matt to watch television. An activity they could do together. The pharmacy called to say G’s prescription was ready and they were closing soon.

I remember being trapped by indecision. (Matt used to call this particular phenomenon analysis paralysis.) The pharmacy was (is) seven minutes away. Taking into account the speed of the drive-through window, I knew I could be home in sixteen minutes. I had a choice: disturb G and H, who were calmly watching television with their father and drag them out of the house again, or let them stay with Matt. I was afraid to leave G and H with Matt as much as I was afraid to leave Matt with G and H. What if Matt needed something while I was gone? What if he confused his words and grew frustrated, and his temper (which had been calm all day) snapped? What if G and H needed something and Matt couldn’t help them?

The fact that this internal debate existed in my head was a reminder that though we’d spent the day in relative normalcy, nothing was normal.

I decided to leave everyone at home and race to the pharmacy. In looking back, I think I made that choice because I was afraid to face what it would mean if I couldn’t leave them home alone together for sixteen minutes. My heart pounded during the entire drive. As the pharmacist keyed in my name and address, I counted down the seconds while every worst case scenario ran through my head.

Back home, everyone was safe. But when I arrived, H came to me in tears. He’d wanted to play soccer or basketball or wrestling with Matt and Matt simply hadn’t been able to. Matt was heartbreakingly crushed by the admission.

That was the last time I left them all home alone together.

I suspect that’s hard to read. Or maybe just hard for me to write because I remember the looks on everyone’s face and the desperation I felt to fix this for all of them.

These days in September were hard. And to be honest, I’m not sure this story will ever stumble upon a day that wasn’t hard again. With that in mind, my concern is that these hard days will overshadow the message and point of this entire project.

So I’ll leave today’s post with this thought: there’s a difference between hard days and hopeless days. Every hard day we lived left us exhausted—mentally, physically, emotionally—but every hard day also taught us that we were stronger than we knew, made us more prepared for the next day. Every time we felt the breath knocked out of us but found a way to breathe again was a triumph. We couldn’t have survived any of the hard days if we’d been hopeless.

So the reminder I’m leaving as the story gets darker and harder to write is this: I’m not writing to tell a tragic brain cancer story, I’m writing to tell the story of a hope so bright, almost nothing could destroy it.

September 17, 2017: Reunited

After a long week, our family of four was reunited on September 17, 2017.  Matt was home from the hospital and the kids returned from the camping trip—muddy, exhausted, and unbelievably happy.

I remember the moment G was dropped off. Matt walked down the stairs to greet his friend and thank him for taking the kids on the camping trip. He was unsteady on his feet. He confused a few words in the short conversation. I wondered whether his friend noticed or whether the subtle symptoms were only visible to me because I knew where to look. I remember hoping that his friend couldn’t tell. Matt’s disease, with all the accompanying symptoms, wasn’t a secret, but I knew Matt didn’t want pity or sympathy. He didn’t like his disease on display.

That afternoon was difficult. Matt’s headache and back pain returned with a vengeance. Duke told us the pain might last until the bleed resolved on its own. There was nothing to do, but wait. Duke had also advised against the stronger medication prescribed at the hospital. The rationale: a strong pain killer could cause sleepiness and confusion and we’d be left unable to tell whether the symptoms were medication side effects or tumor related concerns that needed to be addressed immediately. Matt’s only option was Extra Strength Tylenol.

It barely took the edge off his pain.

He struggled to connect with G and H. He mostly kept his distance from them, choosing to nap upstairs or sit quietly on the couch without engaging with them. A few times, when the pain peaked, his temper snapped.

That cruel transition I wrote about before, the erosion of Matt’s relationship with G and H, took a new painful turn on September 17, 2017. Before, he couldn’t play and they missed him, now he spoke sharply and they avoided him. They started to pull away from him as much as he’d pulled away from them.

I learned to navigate that new space between them, to calm Matt’s temper and redirect G’s and H’s attention, worrying always that it would feel to one like I was taking sides with the other, hoping always that things would be better in the morning.

I sat to write today’s post and found only a skeleton of a story to tell. September 17, 2017 is a quiet day as much as any of our days would ever be quiet again. The stillness of the story today made me realize the breakneck pace the story had started to take. Once again, the speed with which everything happened caught me off guard. I’ve been absorbed in the story. I forgot to look beyond the events and ask how.

I’ve said that one of my goals is to slow down the events of the year and find the moments that pivoted us even further from the path to happily ever after. I see those moments in the story of the past week.

That moment when Matt texted “I miss them already” and a part of my heart knew to pay attention. That hemorrhage, which swept in a month of 9-1-1 calls and hospital stays. That first time Matt looked at me and his gaze shredded my heart. Those were the moments that pivoted us away from happily ever after.

But in slowing down the story, I’ve also found the moments that kept us anchored in hope. The moment the doctors said they’d never seen a tumor disappear that fast and that completely. The moment Duke said the tumor treated with poliovirus was shrinking. The moment when Matt had texted “can u talk” less than twenty-four hours after I’d been warned that he might never want to text or talk again. Those were victories bright enough to cast away the darkness surrounding us.

The days were hard—stunningly hard sometimes—but real, true hope glimmered everywhere we looked. So we persisted.

September 16, 2017: Slow Climb

The story of September 16, 2017 is one of a breathtakingly fast upswing, as promised.

At 6:46 a.m., my phone buzzed with a text message from Matt: can u talk?

Matt hadn’t texted, emailed, or used his phone at all during his hospital stay. Even in the moments when he’d been conscious, he simply couldn’t use the device. When that text message arrived, I knew the day would be nothing like the day before. That text wasn’t simply a text. It was a confirmation that Matt was back. He wanted to talk, he could talk, and he was mentally present enough to send a text.

I read the text and knew the nightmare of the last few days was over.

Around 8 a.m., a friend texted to see how I was doing. I wrote back: I’m good. I think it’ll be a better day. We bottomed out before. Now I’m just nervous that I’m letting the kids go out into the woods.

The question becomes—why was I letting the kids go out into the woods?

The last few posts have been long, shattering the 500 word limit I’d tentatively placed on myself when I started this blog. And yet, I’ve barely introduced the topic of the annual father-child camping trip.

Every year, a few dads in town gather up their children, their tents and sleeping bags, and their s’mores supplies, and trek out into the woods for a day full of hiking and a night full of sleeping under the stars. The kids—G, H, and all the others who go—love this camping trip.

The planning for the trip started months earlier. In between appointments and MRIs and phone calls, Matt and I texted nonstop about supplies and camping equipment. We discussed timing and G’s and H’s excitement—they talked about this trip endlessly. But, as Matt’s cognitive state started to decline, the idea of sending him out into the woods with the kids became nerve-wracking. When his vision failed him, the idea seemed impossible. I recruited my brother-in-law (the family’s camping expert) to help out. Initially I’d worried Matt would be resistant to the idea—unhappy with the suggestion that he couldn’t care for his kids on his own—but he welcomed the help. And I was relieved. The kids could still go and I didn’t have to worry for Matt.

Then, the hemorrhage and the hospital stay. Matt couldn’t go. The kids couldn’t go.

Not lucky medically but always lucky to be surrounded by family and friends. Two friends offered to take G and H camping with their kids. It’s not easy to take kids camping. I imagine it’s particularly difficult to take kids who aren’t related to you camping. But these friends offered and I couldn’t bring myself to disappoint G and H. I packed them up, made them promise to behave, and sent them off into the woods with their friends.

Once the kids left, I went to the hospital to stay with Matt. He was—better. Not completely himself. Still impulsive—stubbornly so—but that blank, mean look in his eyes was gone. He smiled when I walked in and remembered that the kids were supposed to go camping. When I told him they’d gone with friends, he was disappointed he couldn’t take them, but glad they’d gone.

Around noon, the doctors started talking discharge again. This time, I didn’t balk, didn’t rush around to find a nursing service to help. Matt’s safety was still a concern—the physical therapists had examined him and his balance wasn’t great—but his mood and temperament had returned to a more normal range. He wasn’t angry and irrational. We were on an upswing—maybe not the top of the upswing—but on the way there and that was all that mattered.

We’d survived a razor edged rock bottom. We could survive a slow climb back to the top.

Yesterday in Post Hope, the kids left for the same camping trip with my brother-in-law. I packed them up, they made the same promises to behave, and I sent them off to the woods to be with their friends. A range of emotions crashed through me as I watched them drive off. Excited. They love this trip. Nervous. I’m worried for them, obviously. Will they behave? Will they make safe choices? I’m worried for my brother-in-law, who I hope won’t come back traumatized after sleeping in a tent with two kids out in the wild. But mostly, I’m in awe of G’s and H’s resilience. For two years in a row, G and H have chosen to try, rather than quit; they’ve chosen to go, rather than hide.

In this Post Hope year, when it’s so much easier to hide, they chose to not.

September 15, 2017: A Razor Edged Rock Bottom

On the morning of September 15, 2017, Matt’s dad called me from the hospital and said Matt was sitting up. I nearly hyperventilated from relief. Finally, some good news, some progress. I got G and H ready for school and then used Waze to help me navigate the rush hour traffic to the hospital. (Lesson learned.)

Matt was sitting up, but I was no longer sure that was good news. He didn’t smile when I walked in. He didn’t say much as I bustled around him, putting down my things and filling the silence with updates about G and H. He didn’t react when I showed him pictures of the kids (G in her cheerleading outfit and H with his hair spiked up). He was blank, a shell of the vibrant, expressive person he’d been. I worried that the blankness was not emotional—that he was upset about being back in the hospital—but rather a function of the bleed causing trauma to his brain. When I asked the doctors they said they couldn’t be sure. They couldn’t tell me whether Matt’s mental and emotional state would return to his (new) normal within a few days or a few weeks. They said he might never come back to himself or it might take years. In short, anything was possible and we could do nothing but wait. (Patience is not a virtue I possess, remember?) But I had to have hope.

Around noon, the doctors ordered a midline IV, which they explained was a more permanent IV for people who would be staying at the hospital longer term. The MRI had confirmed that the bleed was coming from the tumor infused with poliovirus (in the left parietal lobe) and it had grown from Wednesday to Thursday. The doctors said it could takes weeks to resolve. I mentally prepared myself for a long hospital stay and waited for Duke to call me with their interpretation of the MRI. Duke’s opinion—Duke’s expertise on poliovirus—was the only opinion that mattered.

When Duke called about the MRI, the day shifted gears entirely, swung wildly positive. The Duke doctor confirmed that the bleed was coming from the tumor that had been treated with poliovirus—and yes, the likely cause was Avastin—but the tumor itself had shrunk. And—and!— the tumor in the right parietal lobe, the one that had received Gamma Knife radiation just weeks earlier, had disappeared completely. Vanished. Gone.

At about 3:30 in the afternoon, the day descended into chaos. Matt’s doctor walked in and said despite the introduction of the midline IV and despite what the doctors had said earlier about a longer term stay, they (whoever they were) had decided that Matt would be discharged that afternoon. Medically, he was stable and they were doing nothing for him.

I was speechless. Even in Post Hope, I remain speechless about that shocking declaration, that shocking complete and total about-face.

Matt’s mom and I went into overdrive to find a nursing service or an aide who could help me care for Matt at home. In Matt’s current state, I could not care for him and G & H on my own. If it were a matter of pain management and untangling confused threads of thought, I’d like to think I would have been able to care for everyone. But pain and confusion were the least of the symptoms worrying us.

And with that the story has arrived at one of the absolute cruelest things brain cancer ever did: it stole Matt—funny, kind, charming Matt—and replaced him with a stranger.

I’ve hinted at the subject before, mentioned that sometimes I missed Matt when he was right in front of me, mentioned that sometimes I got the worst of him (I’d like to think he knew that I was “in this no matter what.”) I suspect this won’t be an easy topic to read. It’s not an easy topic to write—I don’t quite have the words to capture this part of the story, and I’m afraid I’ll taint Matt’s memory by telling this part of the story. But I owe the truth and I have to hope that after 175 posts, anyone following along has gotten to know the real Matt, and they will know–like I always knew–that the person in the story I’m about to tell was not the real Matt. I also have to hope revealing this truth, this particular hardship some brain cancer caregivers face, will help someone else in similar shoes feel less alone. Reaching out across unknown miles. Making a little good out of all of this. That’s always been the endgame.

Matt did not spend most of September 15, 2017 unconscious as he did the two days before. He was taking pain medication, but he was not asleep for the majority of hours. After the insertion of the midline IV, he wasn’t blank, either. He was, instead, impulsive and angry and patronizingly mean. In short, he was everything Matt wasn’t.

As is so often the case, the easiest way to tell this part of the story is to pluck out a single example from the day. Matt woke up agitated after the introduction of the midline IV and made two very reasonable requests. He wanted food and he wanted pants (rather than a hospital gown). I handed him his lunch tray and he pushed it away, saying he wanted food. No problem—hospital food maybe is only food in the loosest sense of the word. I ran to the Starbucks in the lobby and brought him a sandwich I knew he liked. When I presented it to him, he yelled at me for removing the lunch tray and bringing a sandwich—he wanted the lunch tray, not the sandwich. He asked why I hadn’t brought pants. I offered him the jeans he’d worn to the hospital and he yelled and asked why I couldn’t understand a simple request to bring food because he just wanted to eat pants. We talked in circles, me trying to placate Matt, Matt growing angrier, more frustrated, meaner, likely because the thought in his mind was not the one coming out on his tongue. Maybe because the steroid dose was too high. Maybe because the tumor was too aggressive.

When Matt tried to stand from the bed by climbing over the bedrail rather than the open side—and snapped at me for trying to help—a kind nurse stepped in. She helped convince the doctors that Matt was not ready to be home yet. She bought us a few more days to make arrangements.

In the car on the way home, I broke down on the phone with Matt’s sister. Fear, exhaustion, stress, and now guilt, too. I wanted Matt out of the hospital, home with his family and comfortable, but I was terrified of bringing him home in the state he was in. His safety was a concern, but also, honestly, it hurt to be the person to bear the brunt of his anger. I could do it, but I didn’t know if I could do it and then put on a smile for G and H while I helped them with homework. I could do it, but would I be able to protect G and H from that anger?

That night, I arrived home in time to tuck G and H into bed. They were struggling with Matt’s absence. Between leaving the shore early for the Duke trip, the Chicago trip for work, his overall mental absence while home, and now this hospital stay, they missed him. G asked why he was so sick, and I knew simply saying that daddy had headaches wasn’t enough anymore.

One year ago, after fifteen months of euphemisms and skirting the truth, I introduced—without Matt, without even consulting Matt—the word cancer to G and H. I used the phrase the Duke social worker had suggested we use many months earlier. I said, “Daddy has a spot of cancer.” I told them cancer was a disease that made some people sick, but that Daddy was in a hospital with a lot of doctors who were doing their best.

One year ago, I no longer could protect G and H from the monster that had invaded their lives.

One year ago today, despite all of that, I also believed Matt was on the road to a cure.

The wild optimism was dampened only by this thought: what was a cure—a cancer free MRI even—if the treatment side effects had stolen Matt, anyway?

September 15, 2017 is a rock bottom. It’s a razor edged rock bottom. But after the rock bottom comes the upswing. And this upswing will be awash in hope. After all, we’d defeated two tumors and the third was shrinking.

September 14, 2017: High Expectations

Early in the morning on September 14, 2017, I received a call from the hospital. There was some confusion over whether Matt had a new secondary bleed and whether another tumor had been found. I panicked, left my mom to get G and H off to school, and raced to the hospital.

Or, rather, I wanted to race to the hospital. The heavy rush hour traffic had different plans for me. I crawled to the hospital, the twenty minute driving taking just longer than an hour. When I arrived, anxious, terrified, and so, so overcome by road rage, I found Matt still sleeping, all but unconscious. The nurses told me he’d just had a MRI and was receiving pain medication via IV. We agreed he didn’t seem to be currently in pain.

I set my things down in the chair beside a sleeping Matt and went in search of the doctor in charge of Matt’s case. I learned that there was no new bleed, no new tumor, and there’d simply been some confusion because the recent CT scan had been compared to a MRI from June 2016. On top of road rage, I added outrage rage.

After speaking with the doctor, I texted a friend and wrote: I spoke to the doctor this morning but I feel like he doesn’t know what he ‘s talking about—yep I’m at the point where I think I know more than the neurology doctor.

In truth, I didn’t know more than the neurologist (obviously), but I did know more about Matt’s specific case. I was an expert in Matt and, whether fair or not, I expected the doctors treating him to be experts in him, too. They didn’t need to memorize his medical history like I had—that selective photographic memory came in handy—but I did expect them to review his file, to not ask me the same questions and force me to repeat the same warnings. (Matt often teased me for always having high expectations of people. No shame.)

I went back to Matt’s room and sat beside him while he slept on and on. I spent the hours texting updates to friends and family, calling Duke, and keeping Columbia in the loop. I learned that hospital time doesn’t pass like normal time. The minutes drag on while the hours seem to pass too fast.

At some point, the palliative care doctor arrived. She walked into Matt’s room and slid closed the glass door dividing us from the rest of the Intensive Care Unit. She brought two chairs together and, with a furtive glance at Matt’s all but unconscious form, gestured for me to sit. She explained to me the purpose of palliative care and what her role at the hospital entailed. She told me that Matt’s disease and current state were serious and that I needed to start considering…things I hadn’t yet wanted to consider. She used words that, even in Post Hope, I don’t want to hear (or see typed out). Not this early in the story, anyway.

I took her business card, thanked her, and with all the kindness I could muster with the beeping of the machines monitoring Matt’s vitals in the background, told her we didn’t need palliative care or hospice. I told her, my voice shaking, that we didn’t even have the results of this MRI. I told her that she didn’t know the potential of the poliovirus, the optimism in every Duke phone call. I told her that she simply didn’t know Matt. She didn’t know how much he’d already overcome, and how much strength he had to fight.

She left (probably thinking I was delusional) and I paced and fumed.

The theme of this day was rage. It was an easier emotion than the alternative, which was simply despair.

Looking back on the first of the September hospital stays (there will be three more), I see that these were the days when I was forced to learn to live without Matt. I couldn’t consult with him on decisions—for himself, the house, or the kids. He couldn’t call me before he went to bed or when he woke up in the morning. We couldn’t talk or laugh or tease at all.

One year ago today, I had no reason to hope. A doctor had walked in and all but told me to stop hoping. But I didn’t. I looked at Matt and thought of every day we’d spent together, every moment when we’d faced that darkness together, and I knew we had so much more story left together.

I was right.

I mentioned, in a post early on, that our story was full of down cycles and upswings, and noted that the upswings sometimes arrived breathtakingly fast, though they’d never reach quite as high as before. I was right when I told the palliative care doctor that she didn’t know Matt, that we weren’t ready to use the words she used. Matt had a lot more fight left, more down cycles, but also more upswings. We had so much hope left.

September 13, 2017: A Long Night and A Long Day

Matt told me his pain was at 1000 and I’d never felt so helpless or so alone.

I gave Matt another dose of Tylenol and called Duke’s Emergency Line. The answering service took my name, phone number, and message and told me that the on-call doctor would return my call shortly. But minutes passed. Maybe hours. Maybe only seconds. (I don’t have the call log and time became meaningless some time after midnight on September 13, 2017.) Matt was in pain and begging me to help him. I told him I was going to call 9-1-1, that I couldn’t wait for Duke. I told him I didn’t know what to do.

With shaking hands, I dialed 9-1-1 for the first time in my life. I explained about the brain tumor and the doctor’s one to ten scale and that Matt’s pain was at 1000. As I spoke, I tried to anchor myself to reality, but I couldn’t. The moment felt so surreal. What had just happened? Hours ago, we’d watched a show and gone to bed and everything had seemed fine.

I was sure in the cold light of the morning, Matt would be upset that I’d overreacted in calling 9-1-1. But in the dark heart of the night, I couldn’t think of anything else to do. I didn’t trust myself. I wouldn’t learn to trust my instincts with Matt for a while yet.

Sometime while I had been on the phone, Matt had stood and packed himself a hospital bag—a phone charger, a bottle of water, and a few other necessities. Somehow, Matt, who was suffering from unspeakable pain, was more rational than I was. (Irrationality on my end became a theme of the day.)

Matt and I sat on the front steps and waited for the ambulance. He sat with his head in his hands, but the worst of the pain seemed to have faded. At least that’s the way it looked to me. I had learned, and would continue to learn, how adept Matt was at hiding the truth of his pain and the extent of his symptoms. We decided he’d go to the hospital in an ambulance and I’d get the kids to school; I could be there by 8 (ish).

A policeman arrived and, slightly grinning, approached Matt. He, too, was fooled by Matt’s appearance. The policeman, who meant only to help, asked if Matt simply had a migraine. I explained again about the brain tumors and the doctor’s scale of one to ten, and Matt’s answer of 1000. The policeman stopped grinning.

The ambulance arrived and Matt walked to the stretcher. In that moment, I was sure I’d overreacted. If I’d just waited for Duke to call me back… But then, Matt sat on the stretcher and attempted to answer the EMT’s questions, and every single one of his answers about his condition was wrong. Dangerously wrong. He’d confused his entire medical history, all his prescriptions and procedures. I told the EMTs not to listen to Matt. I told them about Duke and the poliovirus and that we needed to run any treatments or medications past Duke to ensure they didn’t conflict with the poliovirus. The EMTs asked if I was coming.

I’d often felt the desperate need to be in two places at once, but never more than in that moment. Matt needed me at the hospital. But the idea of waking up G and H, ripping them from their beds, terrifying them, seemed wrong. I needed help. (If I’d been even slightly rational, I would have realized I needed to call for more help much earlier.)

I called Matt’s mom. I hated that I knew she’d be terrified by the middle of the night phone call, worried for her son and panicked, but I knew she’d come in a heartbeat. She did. And I was at the hospital filling out Matt’s emergency room paperwork within the half hour.

At the hospital, a CT scan revealed that Matt had suffered a brain hemorrhage. The neurosurgeon who operated on Matt in June 2016 examined him, but his hands were tied. Avastin, that black box drug, the one that had prevented us from seeking other treatments earlier, was preventing us from acting now. Avastin, that black box drug associated with so many dangerous side effects, including a risk of hemorrhage, had likely caused this problem. We could do nothing but dose Matt with pain killers and wait for Duke to call and give us direction.

We waited. Because I’d been up since midnight, because I’d expected a call first thing in the morning, the wait felt endless. When Duke returned my call around 1 p.m., the answer they gave was the same one I’d heard from the neurosurgeon. Surgically, we needed to be conservative because of the Avastin. The plan was to do nothing: monitor Matt’s vitals, keep him pain free, and wait for the bleed to resolve itself.

That night, because apparently, yet again, the world outside the emergency room had continued to spin, was Back To School night. I needed to be in three places at once: with Matt, with G & H, and at the kids’ school, meeting the teachers. (In retrospect, I probably could have skipped back-to-school night, but in the moment, it had seemed crucial that I was there. Irrationality was the theme of the day, after all.) I called in more help. Matt’s mom went to Matt in the hospital, my mom helped with G & H, and I went to school.

I remember waiting in the lobby for the moment when the parents would be invited up to the classrooms. Parents were mingling in the lobby and I stood off in a hallway. I remember thinking I couldn’t even make eye contact because I would unravel. I wouldn’t know what to say, how to even begin to admit the night and day and nightmare I’d lived, was living. I needed to get to the classrooms, collect the information, and leave.

I remember the exhaustion, physical, mental, and emotional. I remember the effort it took to smile at another parent in the hallway.

I remember, most of all, the isolation. That crushing, breath stealing isolation. The feeling that I was no longer in the same world as anyone around me. The feeling that I might never again be in the same world as anyone around me; the distance had grown too great already. In Post Hope, the distance often seems insurmountable. The hope becomes that maybe, one day, it won’t be.

So…how to soften the edge of a long night and a long day? How not to leave the story of today on a low note?

I met G’s and H’s teachers that night and walked away from the elementary school feeling relief for the first time in nearly twenty-four hours. For at least the foreseeable future, we (our family of four) were in for a difficult road, but G and H were in good hands. Of that, I had no doubt–they had incredible teachers guiding them. I knew that no matter what happened next, G and H would have a safe space to go and learn and be with their friends.

There is so, so much value in that knowledge. And I will always be grateful for the teachers who offered an extra hug, an extra smile, simply an extra kindness to two kids who might have also felt so achingly alone.

September 12, 2017: Scale of 1-10

One year ago today, Matt booked a flight to come home. Overnight, after an excruciating headache that had lasted most of the night, he had decided to forego the rest of the trade show. He was devastated, but sure it was the right move. He booked a 4 p.m. Chicago time flight home and planned to still spend the morning at the trade show. He ended up leaving early.

At 1:45, I helped Matt with a texting issue and he responded: Thanks. I’m obviously a mess. He wrote (later) that he was glad to be coming home.

My heart broke for him. If he was admitting the truth, how could I not?

I went into overdrive, calling and emailing Duke to let them know Matt’s symptoms were worsening by the day and scouring the Internet for a story that might calm the panic. I read the studies about Gamma Knife radiation that I’d read a thousand times before. I paced and worried and tried to figure out what exactly it meant that Matt was coming home. (Funny side story: In the flurry of stress, I’d accidentally thrown out H’s homework sheet and was forced to dig for it in the recycling bin that was already out on the curb waiting for pick up. Not my finest parenting moment.)

I texted a friend and told her that Matt was acting the way he did when the poliovirus caused the swelling in the left parietal lobe. She asked whether the symptoms (the confusion, trouble texting) could be side effects of the Gamma Knife radiation. I told her I didn’t think so. The radiation Matt received had been to the right parietal lobe of Matt’s brain. Wouldn’t the symptoms look different if another part of the brain was swelling? I admitted I didn’t know. I couldn’t even put forth a cute theory about what was happening.

I did know that someone—a medical professional someone—needed to intervene. I did know that Matt was coming home to me, and as of that moment, we had no appointments scheduled or contingency plans in place to prevent him from getting worse, or to make him better.

At 5:33, I spoke to the nurse at Duke. She told me she’d pass on Matt’s symptoms to the doctor. I expected I’d hear back about next steps in the morning and I breathed a sigh of relief. That was all I needed to hear. That there were next steps. That there was something we could do. I could wait until the morning. Or so I thought.

Matt landed around 7:30 and was home shortly after 8:30. G and H were already in bed. Matt walked into the house and beelined toward his favorite spot on the couch, leaving his suitcase by the door. We watched a show together, and I remember thinking: okay, he’s not so bad. I was overreacting, as always.

We went to bed around 10.

Just before midnight, I awoke to the sound of Matt groaning in pain. I turned to his side of the bed and it was empty. He was lying on the floor at the foot of the bed, writhing in pain, holding his head. I shot up out of bed and asked him the question the doctors had ordered me to ask any time Matt had a headache: On a scale of 1-10, how bad is your pain?

In the fifteen months since Matt’s brain tumor diagnosis, he had refused to answer this question—for me and for the doctors. He hated the arbitrariness of the one to ten scale. I asked, expecting him to be annoyed, but knowing that when I called Duke’s emergency line, they’d want to know. I asked, because I knew the answer he provided, if he provided one at all, would determine what to do next.

For the first time, Matt answered the question.

On a scale of 1-10, how bad is your pain?

His answer: 1000.

And with that, the bottom of everything dropped out from beneath our feet.

September 11, 2017: Two Versions of the Day

By 8 a.m. Chicago time on September 11, 2017, Matt was at a breakfast meeting, G and H were off to school, and I began the difficult work of telling myself that the events of yesterday—the headache and incoherent texting—were the result of blips.

I heard from Matt and his dad after the breakfast meeting. Matt’s dad told me that Matt struggled through the meeting, confusing topics and using silverware improperly. Matt told me that his dad was overreacting and the breakfast (whatever it was) called for that particular improper silverware use. (My memory here is too fuzzy to recall more than that vague description.)

After the meeting, Matt went to day three of the trade show. As far as I remember and based on evidence from the text messages Matt and I exchanged, Matt did great at the show. He took a few breaks—and his texts to me weren’t without error—, but he didn’t feel that crushing need to leave as he had the day before.

We talked about whether he should come home early, but he felt as though he could finish out the trade show as long as he took breaks and stayed hydrated. I supported the idea. If Matt thought he could finish the show, I believed him. I’d seen him pull off greater feats before. We’d made miracles in the past. And also, I was too afraid to face what it would mean if Matt was forced home early by the brain tumor. What would it mean to his recovery if he was getting worse after Gamma Knife, rather than better? I didn’t want to ask that question. I didn’t want to see the truth in front of me—the trouble texting, the head and neck pain, the confusion and increasing number of processing issues.

When I sat to write today’s post, I found I didn’t know what to say. The story of September 11 presents three unique challenges. First, and most obviously, Matt was in Chicago and I was in New Jersey. The story I can tell is necessarily not an eye witness account, and only hearsay. Second, as far as I can remember, two versions exist of the story of one year ago today, Matt’s and his father’s. In Matt’s version, everything was fine and his dad was overprotective and overreactive (traits Matt never failed to acknowledge came from a place of deep love, and he was always grateful for that love and concern). In Matt’s dad’s version, Matt’s mental state was concerning. More than concerning. Alarming.

The third challenge in today’s post is arguably the reason this post took longer to write than some others. The story of today is hard to tell because every time I started to write about the events of September 11, 2017, I was drawn to the events of September 12th and 13th and 14th. Days that I’ve written a thousand times in my mind since I started this blog. Days that feel like a lifetime ago and like yesterday all at once. Days that I look back on and know I can’t soften.

The longer I thought about it the more I realized that the story of today is the story of the last day Matt’s Glioblastoma followed any kind of traditional brain tumor path. After today, I couldn’t find a story similar to ours. Even the doctors often found themselves guessing.

As I sat with a half-written post, trying to think of the story of the day, I realized, the story of the day is not mine or Matt’s. The story of today is one of bravery and it belongs to Matt’s dad, who had the courage to believe the truth in front of him, even when (I’m sure) his heart didn’t want to see the facts. During our year of hope and in this Post Hope year, I’ve learned that it takes an unspeakable amount of courage to stare directly at a terrifying truth when every piece of your heart is telling you to hide.