September 30, 2017: Chest X-Ray

Flashes of memory from September 30, 2017 exist in my mind. Each remembered moment is charged with anxiety, with the feeling that we (Matt and I) were so close to the edge of a cliff that our toes were hanging off the edge. The fall was coming and we couldn’t stop it.

That charm that had surfaced during the late night visit to the emergency room had faded. I blamed Matt’s exhaustion for the return of symptoms, and, consequently, myself for keeping him awake so late.

The day was a logistical nightmare. Because it was Saturday, G and H were home from school, Matt had a physical therapy appointment (which would prove to be his last), and I had a dishwasher installation scheduled. (An example of missing Matt while looking at him. Mentally and physically, he wasn’t unable to help with this decision. I’d tried to channel Matt by researching dishwashers and comparing reviews. I walked into the store armed with knowledge and the exact make and model I wanted to buy. I walked out with a different dishwasher entirely. I remember worrying Matt would be annoyed with my choice once he was back on an upswing.)

While I was busy with G and H and the dishwasher installer downstairs, Matt received a call from a doctor. Matt took down notes from this call and handed me the paper. The words he’d written were worrisome, but also nonsensical. Matt told me they’d found a new tumor in his brain and I told him that was impossible because they hadn’t done a brain MRI. I asked who called. He said he didn’t know. He grew frustrated and walked away. I set to work unraveling the tangle of words in front of me.

I called back the phone number that had called Matt. It routed me to the main line for the Atlantic Health System. After about an hour on the phone, relaying Matt’s story and the circumstances of the phone call, I was directed to the person who’d called Matt. The doctor (or radiologist) told me what they’d told Matt. The x-ray revealed a nodule on his thyroid and sclerotic lesions on his spine and ribs.

My hands started to shake as I asked the doctor what that meant. He said it could all mean nothing, but given Matt’s medical history, I should have it checked out. He wished me a good day and hung up. I stood at the kitchen counter and attempted to absorb the blow we’d just been dealt. What was a sclerotic lesion? What was a nodule? It felt like we’d been pushed over the edge of that cliff, like we were free falling. I called Duke and left a voicemail to tell them what had been found and asking what to do next. But September 30, 2017 was a Saturday and I didn’t expect an answer until Monday. So I Googled. I Googled and I told myself not to worry until it was time to worry. All of it—the nodule and lesions—could be nothing. At least there was no new tumor.

That afternoon, we (our family of four) went to a movie. I thought it might be an easy way to spend family time without needing to move or talk. The plan backfired. Matt’s mental state was deteriorating, his pain overwhelming. He snapped at G and H and struggled with pain throughout the afternoon.

September 30, 2017 feels like a last, though I can’t exactly pin down why. Possibly because this was the last day before it all fell apart again. Possibly because this was the last day before our battle against a brain tumor transformed into a battle against something entirely unknowable, a monster that had grown claws and fangs and knew how to hide in plain sight.

Possibly because after September 30th, statistics and doctors’ words and success stories failed us, and our hope became the only thinking keeping us from learning the depths of the chasm into which we’d fallen.

September 29, 2017: Another ER Trip

One year ago today, I panicked. The best way I can describe my thought process is to say that I was worried the other shoe was about to drop and I thought I might be able to catch it before it crashed to the ground.

The day was difficult. The pain, the temper, the inability to have a true conversation—all his symptoms—returned with the addition of a new, terrifying symptom. Matt’s breathing pattern had become erratic. I first heard it the night before when I’d put my head on his chest while we watched television.His heart was beating too fast. The quickened heartbeat returned to normal after a few minutes. I tried (and failed) not to worry. The next day, Matt’s breathing pattern fluctuated. He’d suddenly begin breathing faster, as if he was running a race, though he was doing nothing more than sitting.

My thoughts instantly darted to what I believed was the worst case scenario: a pulmonary embolism, better known as a blood clot in his lungs.

I had a good reason for worrying about a blood clot in Matt’s lungs. During Matt’s latest hospital stay, the hospital doctors had ordered an anti-clotting medication, a standard drug for patients who are largely restricted to their beds. I had refused the medication on Matt’s behalf. Why?

The answer is simple. I refused the medication because Duke hadn’t ordered it. Matt wasn’t a regular hospital patient. He wasn’t even a regular Glioblastoma patient. He was one of 61 people who’d been injected with a highly experimental virus that could save his life. He was an Avastin patient and a stereotactic radiosurgery patient (Gamma Knife). Every standard medication, every standard test, needed to be considered through that lens. The only people qualified to make that consideration worked at Duke’s brain tumor center.

During Matt’s last hospital stay, I’d refused the anti-clotting medication because I’d wanted to get Duke’s permission first. But Duke hadn’t call back right away. We (I) couldn’t get an answer about the anti-clotting medication. By the time I did, (the answer: fine to give the medicine because there would be no adverse reaction) it was too late for Matt to get the medicine.

Which meant, when his breathing turned erratic, that if he had a blood clot in his lungs, it would be my fault.

I called Duke. This in and of itself wasn’t surprising—I spoke to the nurse at Duke daily during this last week in September to give her updates on Matt. We’d begun to establish—I thought (hoped)—a friendly repertoire. I knew when she had to leave early to tend to a medical emergency with one of her own kids and she knew the way G and H had started reacting to Matt outbursts.

Duke told me to take Matt to the emergency room to have him checked for a blood clot. Better safe than sorry. I called in help. Again. Matt’s parents stayed with G and H and I drove Matt for another late night (if 9 p.m. is late night) visit to the emergency room.

We arrived and Matt was taken in for tests. The difficult day melted away. His pain eased and some of that Matt charm returned—he really, very truly always managed to find a way to perform in front of the doctors. In retrospect, it’s somewhat incredible how consistently simply being in a doctor’s office made his symptoms disappear.

We left the hospital around two in the morning. The blood tests and chest x-rays showed no sign of a blood clot. I was relieved, finally able to breathe normally myself, and feeling more than a little foolish. I’d worried everyone for nothing, added layers of stress to the night and forced Matt to undergo more tests for no reason at all.

Without the benefit of hindsight, this late night trip to the ER looks like nothing more than a waste of time, an example of how panicky and paranoid and overdramatic I’d become. But this story is nothing but hindsight, and that late night trip to the ER wasn’t a complete waste of time (though it may still be an example of how panicky and paranoid and overdramatic I’d become.)

Matt didn’t have a pulmonary embolism. The hospital doctor confirmed as much when he called us the next morning. But he’d found something else.

It’s only in hindsight that I see the truth of September 29, 2017. We’d gone to the emergency room for the sole purpose of attempting to catch that other shoe. The only problem: we weren’t looking at the right shoe.

The shoe that dropped wasn’t supposed to ever drop. What happened to Matt wasn’t supposed to be possible.

I’ve said before that we weren’t lucky medically. The truth of that statement will become obvious as the story heads into the final months.

I’ve also said that hopefully our story will help someone else—maybe someone who also seems to be living a nightmare that wasn’t supposed to be possible. Maybe it’ll help medically. Maybe it’ll help simply to know you’re not alone.

September 28, 2017: An Hour At The Office

One year ago today, Matt returned to work at his office. Or, he tried to return to work at his office.

He’d been so nearly himself the day before—engaging with G and H, taking conference calls, interested in returning to normalcy—that when he’d broached the idea of heading into the office, I’d supported him wholeheartedly.

Because Matt wanting to go to work was normal. And Matt believing he could reach for normal, even though normal had fallen so far out of reach, was almost the only thing that could settle the fluttery ever-present anxiety of living with the unknown.

But he’d had a rough night. The ease of yesterday afternoon had not transferred into the evening. The pain and confusion, the frustration of being unable to speak the words in his mind. All of it returned.

He went to work anyway. He was determined and full of hope.

Matt lasted about an hour in the office. I remember how he looked when he came home and went to rest out on the deck, his eyes squeezed closed against the pain, his forehead creased with disappointment in himself. He’d had a good day just the day before. We were both disappointed that yesterday’s step in the right direction was today’s two steps in the wrong direction.

I sat beside Matt and told him it would be okay. We would keep following Duke’s instructions—Tylenol, physical therapy, and acupuncture—and we’d wait for the October 15th MRI. Everything would be better once we made it to Duke. Duke would fix him. They’d fix him and this and us. After all, at Duke, there is hope.

He agreed and we discussed the evening’s plan. While I took the kids to activities, he’d have another round of acupuncture (the acupuncturist agreed to make house calls.)

September 28, 2017 might have been Matt’s last time in the office, although the story may prove me wrong in the coming weeks. September 28, 2017 was definitely Matt’s last time trying acupuncture—the appointment ended up being long and slightly strange. September 28, 2017 is also a truth about Matt I noted in my very first post: his grace and his bravery in this fight. I don’t know the true reality of his internal struggle, the depth of his pain or the extent of his confusion; I know only that when given the choice, he chose to keep reaching for hope.

Yesterday, I struggled to write about Post Hope. It was an impossible day. But in truth, I haven’t written much about Post Hope recently. Partially that’s due to the fact that the story of our year of hope has picked up speed—September 2017 was simply unforgiving in the way it battered us—so I haven’t had to search through emails or photos and ramble. But also, Post Hope has been difficult to describe. Even to myself. For a few reasons.

For one, firsts have piled upon firsts. G’s and H’s first visit to the cemetery—they handled the solemn undeniability of our new life the way any kids might: by playing hide and seek in the car to avoid feeling the worst of the heartache. My first finished Post Hope manuscript—I typed “the end” and wasn’t sure what to do next. (Matt was always my first reader—my first champion, my first critiquer, and my first editor.) Birthdays. Anniversaries. (Thirteen miles later, I was still sad—and fairly sore.)

But also, paradoxically, because Post Hope is calming down. We (G, H, and I) can talk about Matt—I can tell them stories, make sure they know all the great things about him—and the tears don’t come as quickly. G doesn’t cross her arms over her chest and scream for daddy to come back as often. H doesn’t act out every time his grief becomes too overwhelming. We can set up lemonade stands and go apple picking without falling into a wave of grief afterward. The tears and the screaming and the acting out still happen. (Maybe they always will, which is okay.) But we are learning. We’re learning how to live with this hole in our lives. We’re learning how to co-exist with the hurt, sometimes, even, how to smile and laugh and enjoy the moment.

And that feels like a betrayal. To say we are sometimes okay seems wrong. To say we are adjusting to the new normal—well, I simply don’t want to adjust. But we are. And we have to. If only to honor Matt’s story. Because I know if given the choice, he’d choose to keep reaching for normal. Despite the pain and frustration. Despite the bad days (not unlike yesterday) that send us flying backward to those very rawest days of new grief.

And I think, maybe, the truth I’m just beginning to understand is that adjusting to a new normal, learning to live in a new world we never wanted, is inevitable. We’ve done it before. We have no choice but to do it again.

I think, maybe, the truth I’m just beginning to understand is that reaching for hope in Post Hope doesn’t lessen the heartache, but it also doesn’t diminish the story. Instead, reaching for hope in Post Hope may be the only way to truly honor this story.

September 27, 2017: A Last Anniversary

I wrote that September 1st marked our present season. After the anniversary of our engagement and Matt’s birthday, came our wedding anniversary. One year ago today, we celebrated our last anniversary together.

I remember a text message sent to me by a friend on September 27, 2017. I don’t have a record of the text message anymore. It exists only in my imperfect memory, which marked the words because of the breadth of despair and hope churned up by that text. The text message read similar to: I know it’s not the anniversary you wanted, but I hope you have a little fun.

I responded with the certainty that next year would be better, and anyway, next year was more important. Next year (this year, now) marked ten years.

I spent the day researching dishwashers and Matt took calls for work. He seemed to be doing better—struggling to process and respond to questions—but better. More engaged with the kids. More engaged in his work. More engaged in our life. I didn’t mind a quiet anniversary because I knew we’d have a do-over next year. We were on an upswing, on the road to a miracle cure.

Unsurprisingly, today’s post is difficult to write. I’m not sure there are words to capture this day, which should be a tenth anniversary with Matt, but is instead a first anniversary without Matt. Even if there are words to capture this day, I’m not sure I’d want to write them, because my intention has never been to take this story into those very darkest corners.

So, I’m left searching for a story to write. And the only story that comes to mind is the story of September 27, 2008. Which makes sense. The story of September 27th doesn’t belong to our year of hope. The story of September 27th will always belong to 2008.

The day wasn’t perfect.

We woke to overcast skies and rain in the forecast. I panicked—my hair! our lakeside pictures!—it wasn’t supposed to rain on our wedding day. We took pictures inside, I cried about my hair (bridezilla?), and we were reminded repeatedly of the old Russian superstition: rain on your wedding day is good luck. (Despite what Alanis Morissette suggests in her song.)

At the reception, we asked the band to only play two minutes of our wedding song—because we’d only learned two minutes worth of dance moves. The band ignored our instructions and played the entire song, forcing us to repeat the same three moves a few dozen times. By the end, Matt and I were embarrassed and annoyed—and doubled over in laughter. We knew we’d always have a good story to tell.

So no, the day wasn’t perfect. But the day was nothing short of magic.

Two hundred and fourteen people gathered to celebrate our wedding. The number was memorable and significant because two hundred fourteen is my favorite number. I remember when the final RSVP arrived just a week before the wedding. I told Matt it was a sign. He told me we didn’t need any signs.

Matt and I attempted to blend two cultures when we got married. For him, North Jersey Jewish. For me, first generation Russian American. We held our reception in a catering hall in North Jersey and brought in a Russian caterer from Brighton Beach (a heavily Russian section of Brooklyn). We eschewed a formal dinner hour in favor of family style courses that rolled out one after another. We added personalized shot glasses to the tables and encouraged guests to toast us with vodka shots. At the end of the night, we patted ourselves on the back for a job well done. We’d blended two cultures and thrown an awesome party.

I remember the moment Matt slipped the wedding ring onto my finger.

I remember the way he held my hand as we walked into the reception as husband and wife.

I remember the way my cheeks hurt from smiling too much.

I remember the joy of saying husband and hearing him say wife.

I remember the champagne on the flight on the way to our honeymoon.

I remember the moment we realized neither of us had any sense of direction and we walked in lost circles around Paris.

I remember the sun warming our faces on the Amalfi Coast.

I remember all of it and I still wish I remembered more.

Our wedding song wasn’t particularly meaningful to us when we picked it. Matt’s sister introduced us to the John Legend song Stay With You and we liked the lyrics and the melody. Since then, I’ve come to find that the song couldn’t have been a more perfect fit.

Oh I’ll stay with you through the ups and the downs

Oh I’ll stay with you when no one else is around

And when the dark clouds arise

I will stay by your side

I know we’ll be alright

I will stay with you

On those worst days, those long days in hospice when I was helpless and hopeless and Matt wasn’t Matt, all I could do during the hours between visitors was fill the silence in our room with this song. All I could do was stay and hope he knew he wasn’t alone.

Today is the story of a last and a first. Today simply hurts. But today’s hurt does not change tomorrow’s hope.

September 26, 2017: Physical Therapy

Duke suggested that Matt try physical therapy—in addition to acupuncture—to help control the pain in his neck and back. We scheduled Matt’s first appointment for September 26, 2017.

No text messages or photos exist to capture this visit, which remains captured in my imperfect memory simply because it was a first.

The physical therapist brought in a chair for me so I could sit and watch the session. Before beginning any exercises, the physical therapist asked a series of introductory questions. Matt provided long, rambling answers and told stories that didn’t quite lead to any conclusions. After he answered the questions, Matt looked to me for confirmation. He’d come to recognize that he couldn’t give his medical history anymore.

I kept my answers short, correcting only the information I thought was medically relevant. Protecting Matt from that emotional surrender was always as important as keeping his pain at bay.

After the initial questions, we started off with an assessment. The physical therapist watched Matt walk and noted the way he held his head slightly forward of his body. He noted the off balance gait and the right sided weakness. I told the doctor about Matt’s pain and how we hoped to relieve some of it.

The physical therapist used a device (possibly a heat based device?) and massage techniques. I remember watching the physical therapist’s hands on Matt’s neck as every worst case scenario inundated my thoughts. The spinal MRI had been clear: no tumor, no cancer, no reason to worry.

And yet—the pain in Matt’s neck and back. Why was he in so much pain?

Even in hindsight, I don’t know that I can truly answer this question. Had the tumor already slipped into his neck and spine? Was the Avastin hiding the tumor from the spinal MRI? If so, why did the pain disappear after the fourth hospital visit? The truth is that I don’t know and I won’t know. I will only have theories.

I’ve said that one of my goals is to identify when I lost Matt, how I lost him. When I look back on these days, I don’t see Matt—the real Matt—in the story. I’ve asked myself half a dozen times over the last few weeks whether this was the moment I lost Matt. Was it after the hemorrhage? After the seizure? Was Matt—the real Matt—already gone by the time we made that first physical therapy appointment? Every time I’ve asked myself the question, the answer has been no. Matt wasn’t gone, despite the way I can’t see him in this story. (The endless contradictions of brain cancer.) He was still there after the hemorrhage and after the seizure. Glimmers of the real Matt existed well into January.

And with that in mind, maybe I need to change the focus of this project. Rather than searching for the moment I lost him, maybe I need to focus only on the moments in which I saw him. Those moments in which his spirit burned brighter than an aggressive, relentless tumor.

Another September 26 stands out in my mind, though this one has nothing to do with brain cancer. It’s nevertheless just as relevant to the telling of our story, so I’ll add just this for now:

Ten years ago today, I donned a black Alice & Olivia dress, slipped my feet into a pair of six-inch purple heels, and greeted a room full of friends and family who’d traveled from every corner of the country to spend the weekend with us. Ten years ago today, I knew my life was going to permanently change for the better.

Because ten years ago today, I was one day away from marrying a man whose spirit will always burn brighter than an aggressive, relentless tumor.

September 25, 2017: Consistent

By September 25, 2017, our days had lost any kind of consistency. A good night was followed by a difficult morning, which all had no bearing on the kind of afternoon we could expect. The severity of Matt’s headaches, his pain, his confusion level, and his temper fluctuated throughout the day and no particular pattern emerged to help us predict how Matt would feel at any given moment.

The only certainty: he needed relief.  He could not continue living in this much pain while we waited for the bleed to resolve itself, and, more importantly, while we waited for the poliovirus to finish destroying the tumor and fortifying Matt’s immune system.

So one year ago today, we started treating the symptoms.

For the headaches: Matt was only allowed to take Extra Strength Tylenol for the pain. Most of the time, the Tylenol barely seemed to take the edge off the pain, but Duke maintained the belief that the Tylenol would work if administered every six hours (four? eight? my memory is fuzzy on the exact interval). We stuck to the schedule obediently. But as Matt continued to suffer, I couldn’t help feeling increasingly abandoned by the people into whom we’d placed all our faith.

During these September days, I was simply disappointed with Duke. I wanted them to do more than suggest Tylenol and copy-paste the things that might trigger a seizure. I wanted them to fix Matt—which maybe (probably) wasn’t fair. Glioblastoma is a complicated, cruel disease.

In retrospect, I understand the disappointment better. I wanted Duke, a leading brain cancer institution, to ask questions, to look at Matt as an individual patient and stop assuming that the headaches were caused by the hemorrhage. I wanted Duke to wonder why all of a sudden Matt was deteriorating despite the overwhelmingly positive MRIs. I wanted Duke to be the hero in our story, the white knight. Maybe I wanted too much. Maybe I was allowed to want too much.

For the neck and back pain: We’d heard of an acupuncturist who’d worked wonders for patients with other illnesses and conditions. Matt’s mom drove Matt to the initial appointment and, afterward, Matt reported that he felt some relief from the pain for a few hours. We scheduled another appointment for as soon as possible.

For the confusion: We could do nothing but hope, cling to the moments when his thinking seemed clearer, cheer the afternoons when he could participate in another conference call for work, and enjoy the conversations in which the words he meant to say were in fact the words that rolled off his tongue.

For the temper: There was little we could do to calm Matt’s temper, which had begun to surface only when the pain seemed unbearable or his frustration level peaked. All I could do was make sure G and H were processing—emotionally and mentally—all that they’d seen (the seizures) and heard (that anger).

On August 21, I wrote that when friends suggested therapy for G and H to help them process all that they’d seen and heard, I responded: not yet. I told those well-intentioned friends that we hadn’t reached the tipping point. A month later, I began to believe, maybe, we’d reached that tipping point. While Matt went to acupuncture, I met with a children’s therapist. We talked about what G and H had seen, the kind of questions they asked, and their responses to all of it. The therapist put me at ease—they were responding normally, their questions were appropriate, their lack of questions was appropriate.

After I left the therapist, I decided as long as G and H were responding appropriately to our new normal, I didn’t need to pursue any more counseling. Like before, I decided that I didn’t need to create a mountain out of a molehill, particularly if things were only getting better—which they were, I hoped, in microscopic bursts.

These days between the second and third hospital visit were challenging. Waiting for the poliovirus to cure (yes, cure) Matt was challenging. Missing Matt while staring at him was challenging (an understatement). But treating the symptoms— running from one appointment to the next, sticking to medication schedules, finding ways to provide Matt with relief, was exhausting, but not challenging.

The truth is we’d spent so many days feeling helpless, feeling useless and subject to the whims of the tumor, that any day in which we’d faced the symptoms head on felt like a victory, however minor. As I’ve said so many times before, even the smallest victory was worth celebrating.

In our year of hope, in the worst months of our year of hope, the tiniest triumphs kept our hope consistent, even when our days were not.

September 24, 2017: Football Sunday

Matt reserved Sundays in the Fall for football. When we first started dating, Matt’s obsession with football baffled me. I couldn’t understand the compulsion to spend an entire day parked in front of the television watching a game I didn’t understand. After we had kids, Matt’s obsession with football (still baffled me, but) gave way to the realities of parenthood—parking in front of a television is not that fun when surrounded by two kids with energy to burn—and he learned to prioritize the important games and keep tabs on the other games via his phone. Nevertheless, football Sunday—with all its bells and whistles—was one of his absolute favorite pastimes.

On September 24, 2017, Matt wanted to watch football and I breathed a sigh of relief. We’d had another long night. Matt had been up dozens of times. He’d been in pain and back and forth from the bathroom, his steps unsteady, his vision questionable in the darkness. Neither of us had gotten much sleep. But Matt wanting to watch football felt normal, felt like Matt.

My brother came to visit and offered to spend the day watching football with Matt—they both loved the Jets despite the endless losing streak. A friend texted me to let me know he was helping out with one of Matt’s many fantasy football teams. I took G to a birthday party and remember sitting outside on a bench with H in the unseasonable heat feeling simply worn down by the worrying and planning and mental load of it all.

When we came home, my brother told me Matt had napped for much of the game, but in the time he’d been awake, they’d had a good time talking sports. Matt had mixed up a few words, but his thinking had been coherent. By the early evening, Matt’s pain was mild—tolerable—and he’d wanted to read bedtime stories to G and H.

I remember sitting at the top of the steps, listening to Matt read to G and H. A friend texted to ask how Matt was doing and I responded: Fingers crossed!! But I’m feeling hopeful!

When I look back on these days, I see how far we were from where we wanted to be. I see how easily what once I would have taken for granted became a benchmark, a way to measure progress. I see what I always see. The friends and family who surrounded us, Matt’s determination to be present with G and H, the ever present hope that things were getting better, one football Sunday, one bedtime story, one sigh of relief at a time.

When I look back on these September days—the first two hospital visits—I remember every morning waking up and feeling as though we were teetering on an edge. I remembering waking up every morning knowing that we were in a transition, that soon we’d stop teetering and fall one way or another. I hoped, obviously, that we’d land softly, back in our old life.

Maybe it’s simply the change of seasons or the echo of last year, but lately, in Post Hope, I find myself waking up with that same feeling, like we (G, H, and I) are in a transition, on the edge of an inevitable change. A step after so long being unable to do anything more than stand still and hope not to fall. I know there’s no chance we’ll land softly back in our old life and I don’t know whether I’ll be brave enough to face whatever that change may be, but I do know, that in Post Hope, I find myself hoping.

And that’s a benchmark, a way to measure progress, that I know not to take for granted.

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September 23, 2017: Potential For A Miracle

On the morning of September 23, 2017, Matt was still connected to the EEG machine. More than twenty-four hours had passed since he’d started the test and we were both ready to hear the results and leave the hospital. We had a family event to attend in the early afternoon at which Matt had been looking forward to seeing his nieces.

The minutes and hours ticked by. We needed a technician to remove the electrodes from Matt’s head and a neurologist to read the report produced by the machine. By 11, we’d found the technician. By noon, we were still waiting for the neurologist. It seemed as if we’d miss the family event.

Matt was disappointed by the endless delays, but calm. Not quite himself in terms of humor and charm, but not the angry person he’d been the day before. As with the previous upswing, the shift came without warning and I didn’t search too hard for an explanation. It mattered only that we’d found common ground again, we were united by a single goal. Back on the same team.

The neurologist arrived and cleared Matt for discharge. The EEG had shown no signs of additional seizure activity. We left with a prescription for Keppra (anti-seizure medicine) for Matt and a hefty dose of guilt for me (had that 9-1-1 call been necessary?).

We rushed to the family event and arrived with a little less than an hour to spare. It was the first time G and H had seen Matt since he’d been loaded onto an ambulance after  the seizure on September 21st. H was cautious. He refused to greet Matt and clung to me. I remember the way I carried him around on my hip, the way his hands locked together behind my neck so I couldn’t let him go. G was simply excited to have Daddy back.

After the event, we tried to settle into a normal Saturday afternoon routine. G had cheerleading and I dragged H with me while Matt stayed home with his dad. During the game, my phone buzzed with password alerts. Matt had accidentally erased his entire phone and, in the process of attempting to restore his contacts, he had changed the password on our family Apple ID. He reset the password half a dozen times during the sixty minutes of cheerleading. He also forgot the password half a dozen times during the sixty minutes of cheerleading. When I arrived home, we were both frustrated and irritated and slightly distraught. Matt was the family tech genius—the guy who programmed the remote controls, connected the lights in the house to an app on our phones, and always made sure to have the most updated gadgets—but now he couldn’t remember a password or retrieve his contacts.

That night, as we (our family of four) sat down for a quiet dinner after a stressful and emotional few days, Matt suffered another seizure. I remember these moments with a heart racing kind of clarity. The seizure was minor, confined only in Matt’s right hand. I guided him to a chair and called Duke, who said not to worry—Matt’s body was simply transitioning from the IV seizure medicine to the pill form medicine. But I had to worry. For Matt, and for G and H. I remember G’s and H’s faces as they saw that involuntary shaking again. I knew they were right back to that moment by the car. I knew that the very last barrier protecting their innocence from the reality we were living had been shattered.

I remember one final moment from this day. In the morning, as Matt and I waited for his discharge papers at the hospital, I rode up in the elevator (after one of my many visits to the Starbucks) with one of the nurses who’d treated Matt in the ICU the week before. The nurse recognized me and my heart sunk. I didn’t want to be recognized by the doctors and nurses. I didn’t want to be a familiar face in the hallways of that hospital. She asked what had happened and I told her. She shook her head, and in her eyes, I saw something that looked almost like resignation—of course, he’s back and you’re back, what did you expect—but what she said was not that. She said (something like): I’m sorry. We were all hoping we wouldn’t have to see you guys again.

Something in her we struck me. I use the word we so often in this project. Sometimes we is Matt and I, sometimes it includes G and H, or Matt’s parents, or all our extended family. But it had been a long time since I’d used we and included the doctors. When Matt and I entered into the brain cancer journey, we (he and I) had felt like the doctors were on our team. Somehow, we’d lost that feeling. Somehow, in all those times the doctors told us to simply wait (take two Tylenol and call me in the morning), while failing to recognize how difficult (impossible, heartbreaking, exhausting) our day-to-day life had become, we’d lost that we with the doctors. Somehow, it felt as if Matt and I had been abandoned, left to drown in the terrifying unknown of Glioblastoma.

That nurse’s we struck me. She couldn’t save us from our day-to-day, give us the tools we needed to keep from feeling as if we were drowning, but she—and her we—had been hoping for Matt, too. And I couldn’t help but think that maybe, possibly, she saw the same potential for a miracle that I saw.

Her we wasn’t a lifeline, but it was an invaluable raft.

September 22, 2017: EEG

I made arrangements for G and H for the day and headed back to the hospital on September 22, 2017 to sort out our next steps. Because, obviously, we needed next steps. Whatever our plan had been—wait for the bleed to resolve on its own—was not working. His pain level remained high. Too high. His personality—that charm and wit—had mostly vanished, appearing only in brief bursts. Now, he’d suffered a seizure.

Matt had a room on the top floor of the hospital in the neurology ward. Unlike with his previous trips to the ER (June 6, 2016 and September 13, 2017) Matt was not admitted into the ICU. He wasn’t in critical condition–physically. Physically, he was fine. No more seizure activity and his vital signs were relatively normal.

But mentally—he wasn’t Matt.

I walked into Matt’s room and couldn’t make sense of the scene in front of me. Matt rested on the bed, a towel wrapped around his head, wires snaking out from beneath the towel. The wires lead to a machine with a large monitor at the foot of Matt’s bed. I asked Matt what that thing was and he said he didn’t know, but he was upset about it.

I learned that the machine was an EEG that would monitor Matt’s brain waves over a twenty-four hour period to check for seizure activity. The purpose (I think) was to determine the right dose of anti-seizure medicine for Matt—something he’d never needed before, but would now become a part of his daily medication cocktail.

Matt was furious about the twenty-four test—we had family in town for Matt’s sister’s baby naming on the 23rd and he wanted to be home in time for that event—but his fury was disproportionate to the conflict. His fury was a living breathing thing, a monster that breathed fire and torched whatever hopes I had for a happy ending to this story.

He had a number of rational reasons to be angry. He was angry with me for making the call that led him back to the hospital. (Maybe I shouldn’t have called 9-1-1. Could there have been another way to handle the seizure? Possibly yes, but even a year removed, I don’t truly know.) He was angry at the nurses who limited his independence by requiring that he call for help to accomplish a simple task like standing or using the bathroom. He was angry at the doctors who hooked him up to a twenty-four hour test that he believed was unnecessary. He had valid reasons to be angry.

But the vastness and depth of that anger. The way he couldn’t control those bursts of rage, the way he shouted about patient rights and couldn’t charm the nurses, the way he didn’t care that we all just wanted him to be safe.

I called Duke. The CT scan showed that the hemorrhage was resolving—the bleed was looking better. Two tumors had disappeared, the third was shrinking, and now the hemorrhage was vanishing. Everything was looking better. So why was Matt only getting worse?

No one had an explanation. No one could tell me why all the tests indicated an upswing, but every moment felt like a free fall.

The answer became again: just wait. Let the seizure meds work. Let the poliovirus work.

On September 22, 2017, my heart broke a thousand times while I sat beside Matt and apologized to the nurses—they needed to know that the man they were meeting was not Matt—and tried to understand how we’d ended up here, in this moment.

That night, I wasn’t sure I could put on a brave, happy face for G and H. I took a few moments for myself before I faced the kids, who’d spent the day with friends and family and once again proved their resiliency.

In those quiet moments, I made a decision. Where we were didn’t matter. Where we were at that moment, wasn’t where we’d be. We had every reason to hope (all those positive tests) and so I had to choose to keep hoping. I had to choose to believe in Matt and Duke and the poliovirus.

The glimmer of hope I clung to, the thought that kept my shoulders back and my chin high, was the one that had been there since the beginning: Matt and I could perform miracles together, we could find our way out of even the darkest midnights as long as we were together.

September 21, 2017: Seizure Activity

September 21, 2017 is a heartbreaking first. I usually give a few days warning before a story like the one I’m about to write, but September 21st arrived without warning for us. I searched the emails and photos, the texts and my memory for some sign that might have alerted us to the events of one year ago today. I found nothing. Nothing in the days leading up to this day warned us that we were about to crash back down. So we crashed without warning. We crashed and moments from this day are burned with razor sharp precision into my memory.

Overnight, H had been awake with a case of croup. I’ve written before about his croup—that first horrible bark-like cough and gasp for air, how if I respond fast enough, the cough and breathing will return to normal, but I end up awake the whole night listening to every catch in his breath. In the morning, his cough had all but disappeared and the only evidence that anything had happened was the exhaustion wearing thin my patience.

We decided to skip services for the Jewish New Year—I was afraid to expose a room full of children to H. But in the afternoon, after it was obvious that H’s croup had truly been a one night episode, we (our family of four) ran a few errands. Matt was having a difficult day. He was in pain—that ever-present pain—confused, slightly off balance, and irritable—he had yelled at G and her feelings had been hurt. We cut our errands short and went home.

I parked by the front steps and walked up the stairs to unlock the door. G and H followed. I turned the key in the lock and looked behind me to see if Matt had made it out of the car. He sat in the passenger seat with the door open, his hands on his knees as if summoning the energy to stand. I offered help and (not surprising to me) he declined. I watched him stand—slowly—his movements stiff as if every action was painful.

Then, his right leg started bending at the knee. His right arm started making jerking movements. I asked if he was doing that on purpose. I remember the smile on Matt’s lips as his terrified gaze found mine. He shook his head no. Then he started tipping over. Falling onto the unforgiving stone driveway.

I remember thinking I don’t know what to do as I dropped the bags in my hand and ran to Matt to catch him. I remember thinking that I need to be careful with my fear because G and H are watching. I caught Matt as his legs gave out and managed to get us almost to the steps—almost. I wasn’t quite strong enough. Matt’s head rested on my lap and the rest of him stretched out in what could not have been a comfortable position.

I remember thinking this couldn’t be real life as I found myself questioning every millisecond of the last few minutes. Should I have moved him? Should I have ignored his decline of help? How was I not more prepared? I dialed 9-1-1 for the second time in my life because I could think of nothing else to do. Afterward, I called Matt’s mom—my first experience dialing 9-1-1 had at least taught me to reach out for more help—and again wished I didn’t have to deliver this heartbreaking news.

I don’t remember how long we waited for the first police car or the two ambulances. In my memory, almost no time passes between my 9-1-1 call and the driveway full of emergency vehicles. But in that short panic-filled time before help arrived, when I was trapped beneath Matt who was awake but unresponsive—either because he was stunned or incapable of speech—H threw a foam ball that hit Matt on the head. (An accident.)

I remember the way I said H’s name. With a sharpness that wasn’t warranted. Mom guilt flooded in. I didn’t want H to look back on this day and blame himself for anything. I apologized a moment after I said his name and told him Mommy was just afraid and everything would be okay because help was coming. He nodded and threaded his fingers through my hair (his version of a security blanket). Guilt laced with fear and panic is not an easy emotion to sit with. I couldn’t stop shaking.

The police and ambulances arrived. Matt’s mom arrived. They speculated Matt had suffered a seizure—a common symptom for brain cancer patients, a first for Matt, who prided himself on checking “no” when asked about seizure activity on the patient intake forms.

As the EMTs loaded Matt into the ambulance and took my information, a car stopped in front of our driveway. The car belonged to one of our friends who’d been driving by and who had a son H’s age. No questions asked, this friend scooped up H and offered to take him for a playdate. H spent the rest of the day with his best friend. That friend, who saw an emergency and offered help without a second’s hesitation, effectively saved the day for H. (G spent the day shoe shopping with Matt’s mom and came home with two pairs of shoes and another on order—so her day was saved, too.)

The day was endless after that. Hours in the ER, more tests, more waiting for Duke to return my barely rational voicemails, another overnight in the hospital for Matt. I was still shaking when I went home that night to talk to G and H, answer their questions and hopefully provide them a little security after a day in which they’d both likely felt their safety nets give way.

I’ve written today’s post thousands of times in my mind. I’ve spent countless moments reliving this day, considering what parts of this day I want to highlight, for myself and G and H. What should we take from this day that has often haunted my thoughts? I came up with this:

The friend who arrived to whisk H away. He saved H’s day, and did so without hesitation. Matt’s parents. They dropped whatever it was they were supposed to be doing to help with the kids and at the hospital. The friends who called and texted and talked me off the ledge of mom guilt. All the reminders that we were never alone, even—especially—when we felt like we weren’t strong enough and had no idea what to do next.

And also, Matt’s smile. Even as his body was betraying him in the most terrible way, he smiled in an attempt to comfort us all. I believe with my whole heart that some part of him was trying to protect G and H from the truth they were witnessing. Proof that even on the worst days, even though sometimes he couldn’t help the bouts of bad temper and irritability, he wanted the best for G and H.

When the story of this year is finished, those are the takeaways I hope G and H always remember.