October 21, 2017: A Few Jokes

Matt spent his first night home from Kessler in much the same way he’d spent his last night home before the fall that led to stitches at the local hospital—waking up countless number of times to go to the bathroom. The difference, this time, was with me. Each time Matt stood from the bed and walked to the bathroom, I held my breath. Each time he stepped from the carpeted bedroom floor to the more slippery bathroom tile, my heart stopped beating. Each time he climbed back into bed, I had to stop myself from asking if he was okay, if he needed help. (He did not.)

That morning, when I woke to write in the pre-dawn light, I didn’t go downstairs with my coffee in an effort not to disturb Matt. Instead, I retrieved my coffee and laptop and sat on the floor just outside the bedroom door. New routines for a new life.

For his part, Matt was ready to return to normal life. He’d so far missed all of H’s soccer games and had no intention of missing another. We (our family of four) threw on our extra layers to protect against the chill in the air, grabbed H’s soccer gear, and headed to the field, where we’d no doubt run into at least half of our small town.

I remember parking the car and walking onto the field. G and H ran ahead. I stayed behind with Matt, who walked, slowly, somewhat stiffly, but surely across the grass to H’s team field. A number of our friends and neighbors and acquaintances stopped him. That amazing brain. He summoned a few jokes. Made a couple of wise cracks. And ultimately proved he hadn’t been beaten by what he’d been through.

By the end of the hour long game, he grew visibly more tired. He sat in a chair and didn’t talk much. He took the hat off his head and ran his fingers over the bump created by the shunt—sometimes when he did this, it looked to me as if he was reminding himself that it was there. Or, maybe that he still couldn’t believe it was there.

That afternoon, G was supposed to cheerlead for the second grade boys football team. Matt had wanted to go, but decided he needed to rest. I took G and H to the game while he rested. When we came home, we invited friends over for dinner.

I don’t remember much about this night. The text messages after dinner reveal that our friends thought Matt seemed good. I responded saying I was happy to hear that because I very much wasn’t sure. I felt mean even thinking Matt was noticeably not himself. I felt like I was being too critical and maybe the problem was me and not Matt, if no one else saw what I saw.

In retrospect, though I don’t truly remember, we were probably both right—that contradictory nature of brain cancer. He was good and we should acknowledge the miracle that he was up and walking and socializing after all he’d been through. And also, I was allowed to be critical and compare him to the person I’d known for almost thirteen years. I was allowed to be grateful that he was good and also miss him and want even more of him back. To hope that one day it would be the way it was before.

After all, that’s what we (Matt and I) were fighting for. Not simply good. But for the way it was before. Because we always hoped and reached and strived toward the highest star in the sky. From the beginning, we didn’t know any other way.

October 20, 2017: Wake Up Call

I remember leaving the hospital on June 10, 2016—walking to the car, the traffic-filled drive home, the uncertain moments watching Matt hold his head in pain. I remember waiting to fly home on March 31, 2017, wondering what was happening in Matt’s head after the infusion of an experimental virus that was supposed to be the miracle we needed to cure him of a disease that had recurred much sooner than we’d expected. I remember flying home from Duke after the Gamma Knife procedure, watching G and H reunite with their dad after his first terrifying hospital stay, and chasing after Matt as he rushed out of the hospital almost before the discharge papers were signed after his first seizure.

But I don’t remember leaving Kessler. I don’t remember the drive home or the way, according to text message, Matt went straight up the stairs to nap in our bed. I don’t remember how G and H reacted when they saw Matt finally home.

It seems like something I should remember. I should remember those triumphant moments when Matt returned.  But I don’t.

Instead, what I remember are the moments that made my stomach drop, those moments that made me realize the full impact of that failed cognition test, which hadn’t seemed so bad in Kessler.

Yesterday, I introduced the idea that Matt’s thinking was still impacted by the tumor and the trauma his brain had been through. I wrote that he believed if he was struggling, then everyone was struggling. The almost necessary implication is that he couldn’t see that his thinking was distorted. And who could blame him? It’s nearly impossible to step back from your own mind.

Two incidents occurred that forced Matt (and me) to confront the fact that Matt was not himself and we could not pretend that he was, as much as we wanted to. The first incident was relatively minor, more of an inconvenience than an incident. Matt wanted to order sushi for dinner. I wrote down the order and he called it in. I asked whether he gave a credit card, as we had no cash in the house, and he told me he did. I believed him. Turns out, he did not give a credit card. We scrounged up the cash using coins and dollar bills from G’s piggy bank and the entire thing could have been forgotten, written off as a mistake, if not for incident two.

The second incident was more than an inconvenience and probably served as a wakeup call for both of us—certainly for me. Matt wired money to the wrong account. We called the bank as soon as he realized his mistake, but the damage had been done and couldn’t be undone until after the weekend, if at all.

We were both frustrated. Matt, because he didn’t want to believe the cognition test at Kessler had been at all accurate. (Who cared if he couldn’t remember a fake grocery list or put a series of pictures in order?) He wanted to believe that he was still capable of doing what he’d always been able to do. And me, because I should have intervened. I should have known. I shouldn’t have let myself be lulled into believing that a discharge from inpatient Kessler was anything more than a superficial step forward in our ultimate battle.

Too often over the next few weeks, I’d find myself frustrated with myself, saying I should have known. Too often I let myself believe in Matt because he was Matt. I’m not sure what that says about me—maybe there’s a lesson in there about believing in yourself—but I know what it says about the man I married and the legacy that G and H inherited.

The cruelty of brain cancer is how easily the bad moments overshadow the good.

The undeniable truth is that even brain cancer couldn’t get me to stop believing in Matt.

October 19, 2017: Sideways

October 19, 2017 marked Matt’s last day at Kessler as an inpatient in their traumatic brain injury unit.

Earlier in the school year, I had made a commitment to volunteer at G’s and H’s school for one day every month. October 19th was my designated day. I’d debated whether to cancel or not. Canceling would mean disappointing G and H, who always looked forward to the day I was supposed to come in. Not canceling meant I couldn’t spend the morning with Matt and I hated the thought of him spending too many hours alone.

Ultimately, my decision came down to logistics. Matt’s therapy schedule shifted due to discharge procedures. He was busy all morning with therapies. I went to G’s and H’s school and told Matt I would see him in the afternoon with both kids in tow.

A friend texted to ask how Matt was doing, how he was feeling about coming home. I told her that I wouldn’t see him until later, but I thought he was okay, though I’d gotten a number of phone calls from him already that morning that made me nervous. I wrote that it seemed as though the change in routine was leaving Matt feeling unsettled.

I suspect unsettled is a barely adequate word to describe Matt’s state. I don’t know how it must have felt to be inundated with new information when his short term memory was still recovering from trauma. I can’t imagine the difficulty he faced in attempting to make sense of a new schedule when his ability to logic had been so recently compromised. I promised Matt that he didn’t need to worry about anything; I would handle the logistics and the paperwork—I was handling the logistics and paperwork. I told him I would make his outpatient appointments and pack his things and ensure every I was dotted, every T was crossed.

But anyone following along with this story knows by now that Matt was our family’s planner and scheduler. He coordinated our trips and made our reservations and planned our departure times around the certainty that I would be running ten minutes late. I was the one who booked the wrong hotel room and forgot to read the reviews on the new purchases. As a result, telling Matt to surrender control of his own schedule to me was akin to telling the sun to stop rising in the east so the moon could take over. He simply couldn’t.

And he couldn’t believe that the struggle to keep track of all the moving parts of his discharge wasn’t universal. If he was struggling, then he assumed everyone (me included) was struggling.

In December, when Matt’s mental state began to decline, this assumption evolved. He assumed his reality was everyone’s reality, and anyone who disagreed was wrong. And that evolved assumption became a source of ongoing friction between us. It became the reason I used the term involuntary gas lighting to explain our conversations and the reason I once called a friend, almost in tears, to confirm scissors weren’t pencils. This evolved assumption made our hard days almost impossible. But I’m getting ahead of myself.

For now, it’s enough to introduce this topic, which, along with the idea that we had to renegotiate our relationship, will dominate the posts in the next few weeks. So I’ll end with this thought:

I’ve said before, and still maintain, that I truly don’t know whether the hardship that defines many of our last months was unique to us because of the nature of our relationship, or whether all brain cancer patients and caregivers experience a similar struggle. I know only that I wasn’t warned to expect this challenge. I know only that sometimes I couldn’t tell if I was losing my grasp on reality due to a potent blend of stress and exhaustion.

I know only that I hope sharing this part of our journey helps another caregiver who may also be struggling to remember which way is up when everything in her world looks completely sideways.

October 18, 2017: Enough For Now

One year ago today, I got the official word that Matt would be discharged from Kessler’s acute in-patient traumatic brain injury unit on Friday morning. After three long weeks, he was coming home, and the psychic who’d come to conduct a sage burning in our home had been proven correct.

The logic became this: if she was right about the day Matt would come home from Kessler, maybe she’d be right about it all. That moment when she’d held my gaze and told me Matt would be okay—maybe she’d be right about that, too. Glimmers of hope. I never promised to be rational in how we found our next glimmer of hope.

When a friend texted to ask how Matt was doing, I wrote that he was feeling good, that I felt as if he was more himself than he had been in a long time. He’d begun responding to text messages from friends and watching television and asking about G’s and H’s day. He wasn’t one hundred percent—he’d perfumed poorly on a cognition test earlier that day—but we didn’t need one hundred percent. For now, the ability to text and watch television and show interest in the kids was enough. The ability to smile and laugh and have a conversation was enough.

In slowing down our year, reviewing each day and making sense of what happened, it’s startling (for me) to see how my threshold changed without my noticing. Back in April, I wrote that a text message with a typo set my nerves on edge. I noted that an exam in which Matt forgot one of the words he was supposed to remember made me want to scream for attention. But by October, a failed cognition test barely registered. Somehow, in only six months, incidents that once kept me up worrying into the late hours of the night, now barely caused me to blink twice.

Which is not to say that I wasn’t endlessly worried. Would Matt be able to return to work? Would his sense of humor and razor sharp wit return? Would our marriage survive the shift in relationship dynamics? And, what would our future look like now? Endless appointments and tests loomed on our horizon. Matt would need more therapy after discharge—the doctors at Kessler recommended outpatient physical and cognition therapy three times a week. He would need more tests—the doctor at Columbia wanted to repeat the inconclusive test from the prior week. He’d need scans and check ups and blood work. How long was our road to a cure? Would we ever return to our normal life?

The difference may be only that, six months later, we weren’t wide-eyed and innocent of the cruelty of brain cancer. Six months later, we’d been battered and nearly broken too many times. And every near break, every hard day, had made us more prepared for the next hard day. We knew enough, by October 18, 2017, to save our strength and sleepless nights for the bigger battles on the horizon.

One year ago today, after weeks of being incapable of doing so, Matt called me to say good night before he went to bed. Like he had dozens of time before from hotel rooms all around the world. And that was enough. To keep hope burning for one more day, that was enough.

October 17, 2017: Green Badge

On October 17, 2017, Matt was one day closer to finally coming home. He was recovering faster than anyone—except the psychic—could have predicted.

One year ago today, Matt moved up from yellow level to green level at Kessler. This meant that he was completely ambulatory—he could walk on his own. He was allowed to get up and move around the unit without supervision. His wheel chair—the one he’d been belted into just seven days earlier—was now a forgotten accessory taking up space in the corner of the room he shared with the uncooperative roommate.

Yesterday I wrote that I don’t remember much from this week. That’s still true. The week is largely a blur. But when I reviewed the text messages from today and sat (for too long) with the wisps of memories floating in my mind and no words to write, more memories flooded in to fill in the blanks of this day.

I remember Matt’s smile, the animation in his face as he enjoyed a freedom that he hadn’t had in almost three weeks. I remember the proud way he walked down the hallway wearing a laminated piece of green paper around his neck—his victory medal. I remember the bewildered looks we exchanged as his roommate thought of new and more outrageous reasons to refuse the therapists at Kessler.

I remember driving G and H to Michael’s—the crafts store—after activities, homework, dinner, to buy supplies for G’s class pumpkin decorating project. I’m not sure why we needed to rush out at night—the project wasn’t due for another few days—but it must have felt necessary at the time. I remember the mostly empty aisles and the race to reach the register before the store closed. I remember thinking that in our normal life, our before life, I would have picked up the supplies while the kids were at school, or at the very least left the kids home with Matt to make a solo run to Michael’s. And I remember G’s and H’s excitement. The novelty of staying out late—and shopping!—on a school night, the secret glimpse into a mysterious adult world. On the drive home, I remember thinking how resilient they were. They’d seen and heard and experienced the reality of brain cancer and still found joy in a late night Michael’s trip.

And then this final memory. I remember how easy it was (for me) to lose sight of the fact that a victory at Kessler was not a victory against Glioblastoma. I knew Kessler wasn’t treating the tumor, that attaining green level did not mean that the tumor had shrunk. I knew the treatment road was still long and littered with potholes.

But attaining green level gave us our next glimmer of hope. Because Matt had proved once again that he could defy the odds, that it was still reasonable for us to believe after every down cycle there’d be an upswing. Sum of your experiences. The more times Matt bounced back from a crash, the easier it was to believe he would always bounce back.

I’m not sure how many upswings are left in this story. Not many after this one, if any, at all. And yet, hope burns for the next fourteen weeks–January 23rd. For the next ninety-eight days, an ember of hope survives despite no discernible upswing.

Because Matt attained green level. Because he wasn’t supposed to survive the seizure at the local hospital. Because he wasn’t supposed to be okay after the hemorrhage. Because he talked his way onto a flight. Because he was going to see his kids graduate high school. Because we’d seen three rainbows and we were in this no matter what and we didn’t know how to believe any different.

October 16, 2017: Not A Spark Of Memory

In my very first post, I wrote that I didn’t want to forget any part of this story. With the help of photos, text messages, emails, and my imperfect memory, I wanted to capture every day of our fight against a disease that acted out in ways that were supposed to be nearly impossible. That goal hasn’t always been as easy as I’d assumed.

There have been (many) days over the last two hundred posts in which I haven’t been able to remember much about the day and the electronic record has been less than illuminating. During those posts, our battle had not yet escalated and the days blended together to form unremarkable blurs. Our (Matt’s and my) text messages revolved around our Saturday night plans, what we should have for dinner, or what activities G and H had scheduled over the weekend. To write anything about those days, I had to sift through a decade of emails and photos to find something worthwhile to say. After each rambling post, I told myself that soon enough, I’d never have a problem finding the story in the day.

I was wrong.

When I sat to write today’s post, I searched the photos, text messages, and emails for something to write. No emails, no photos, and the text messages reveal only a few relevant sentences—that Matt moved from red level to yellow level, which meant he was allowed more independence at Kessler. I searched my imperfect memory. And found nothing. Not a spark of memory. The story is certainly now into those days during which the battle had escalated, and yet, I have no story to tell. October 16, 2017 marks the first of a week long blank in my memory. I have no memory of hanging out with Matt at Kessler. How we spent the hours in between therapy sessions, how G and H adjusted to another week without their dad, how Matt felt about his recovery—all of that information is lost.

So, the question becomes why. Why didn’t this week leave any kind of impression on my memory? Maybe there are only so many stories and memories one mind can hold and between what I’ve shared already and what I will share, my allowance has been filled. It seems possible—although, H swears that he remembers every day of his life, including his infancy. (And sometimes, when he’s reminding me about an offhand promise I made months earlier, I almost believe him.) Maybe between Matt and the kids, between racing around to keep the house running in order and finding time to pop into a Bar Method class, I was spinning too fast to make note of the details of our day.

Or maybe, I simply believed our battle was done escalating. Like those easy June days that I didn’t know to appreciate, maybe I believed I didn’t need to commit every detail to memory. We were far from done with fighting back against an aggressive brain tumor—we still had to make a plan to treat the tumor in the left parietal lobe, understand the origin and cause of the sclerotic lesions—but maybe I started to believe the worst was over. We had poliovirus—which could still deliver on its promise of a miracle cure (in my mind). We had Columbia and doctors who were listening. We had the support of family and friends.

And most importantly, we had Matt back. Not completely. Not consistently. But enough to believe in a better tomorrow, a better next week and next year. Enough to hope that the darkest days were behind us.

October 15, 2017: Liability Issue

October 15, 2017 marked exactly two weeks since the fall that led to the ambulance ride to the local hospital for stitches and resulted in the transfer to Columbia’s Neuro-Intensive Unit for a life-saving shunt surgery.

In those two weeks, G, H, and I were forced to develop new routines at home without Matt. Our old life—the normal life—was still spinning while Matt was at Kessler and we had to adjust. Bedtime story arrangements needed to be reorganized and Saturday morning chocolate chip pancakes needed to be restructured to adjust to one less plate.

G and H still needed normal–or at least something closely resembling normal. I tried to strike a balance, hoping to give G and H normalcy without normalizing living like a family of three.

While Matt’s sister visited him during the day, I filled G’s and H’s calendar with all the Fall outdoor activities we hadn’t had a chance to do. In the morning, we went apple picking and found empty McIntosh trees at the orchard—we were, apparently, a little late in the season for those particular apples. In the afternoon, we went to Fall Fest at G’s and H’s summer camp. They decorated pumpkins, painted their faces, played with the chicks at the petting zoo. We ended the day with Matt.

He was having a difficult day, aggravated and annoyed at being cooped up all day. No one could blame him. He hadn’t breathed fresh air in two weeks. He was forced to shower on the nurses’ schedule. He was sick of the food and the walls and the feel of Kessler. He wanted to go out to a restaurant for dinner. I asked the administrative staff if we could go out—with the wheel chair—and they told me no. Due to liability issues, they could not release Matt; he hadn’t even proven he could stand from the bed consistently without help, yet.

Matt blamed me, for their denial and for the length of his extended stay at Kessler. A part of me agreed that the blame was mine to bear. After all, when the physical therapists at Columbia had assessed Matt’s strength and balance and recommended Kessler, I hadn’t refused. I’d agreed to an acute in-patient rehabilitation center. Everyone (the doctors and Matt’s parents) had been on board with the idea, but ultimately it was my choice. Had I made the best decision for Matt or had something else influenced my decision? Had I been influenced by the fear that I wouldn’t be able to care for him when the brunt of the responsibility was on me rather than a nursing staff?

In hindsight, I am sure in-patient care was the right choice for Matt. The twenty-four hour care and intensive therapies gave him back some of the pieces of himself he’d lost to headaches and seizures and emergency surgeries. But also, in hindsight, I can admit that my decision was influenced by fear. I was terrified that Matt would fall again, and I would, again, not be able to catch him, that we’d continue the cycle of ER visits, hospital stays, and discharges we’d been stuck in since September.

In hindsight, I know I made the right choice for Matt. He got back some of himself before the next down cycle and that was a gift for all of us (him, me, G, and H). I wish I could say the decision, right as it may have been, was not stained by fear, but it was.

In the coming weeks and months, we (I) would be faced with more decisions, some of which were simply impossible, many of which were influenced by fear, all of which were made with a heart full of love and hope. And that’s the truth I hope G and H always remember.

October 14, 2017: Working Hard

October 14, 2017 began Matt’s first (and last) weekend at Kessler. Before visiting Matt, H had a soccer game. I drove both kids to the field, coffee in hand like a true soccer mom, and watched as H and the other kindergarten boys chased the ball in one large pack. I recorded the game to later show Matt that H was participating. (This may have been the one and only game in which H participated during the entire Fall 2017 season—it was worth getting on video.)

Afterward, we (G, H, and I) went to Kessler with plans to spend the bulk of the afternoon with Matt. G and H weren’t thrilled with the plan, at first. They didn’t love walking into Kessler. They complained about the sounds and the smells. They were bored after ten minutes with their iPads and annoyed with Matt’s roommate, a man who made sure every nurse at Kessler knew he didn’t want to be there and would not be attending any of his assigned therapies.

In contrast to his roommate, Matt was attending the therapies and working hard at them. He was noticeably stronger physically and mentally. He was able to walk longer distances than he had the day before and his balance wasn’t terrible. He drifted to the right as he walked, but he stayed upright. He walked up and down a flight of stairs with assistance, while G, H, and I watched and cheered.

And most importantly, we (he and I) could have a conversation, or something that very closely resembled a conversation. He was still struggling with the ability to process questions. Answering a direct question like “what did you have for lunch” remained challenging. But we were able to have a dialogue and most of the time, Matt’s response to me made sense. Sometimes, not. Sometimes he’d suddenly leap into a different topic and I’d scramble to shift gears. But we could talk. And after weeks of being unable to talk, there was a simple joy in just exchanging a few sentences.

For the first time since I called 9-1-1 in September, he was making progress. One year ago today, we were officially in an upswing. The headaches were gone. The back and neck pain was gone. Even the double vision seemed to have resolved. Matt’s prism glasses remained, more and more often, on the nightstand beside the bed, serving as a reminder of a critical error in judgment that had almost cost us everything.

Ten years ago today, Matt and I were returning to reality after a two week European honeymoon. While we’d been away, the United States’ economy had collapsed. Stocks had tumbled. Banks that were too big to fail had failed. I remember driving back from Newark, passing the smokestacks churning black smoke into the dreary gray New Jersey sky (nothing like the brilliant blue skies we’d left behind on the Amalfi coast), and feeling like we’d returned to a world entirely unlike the one we’d left behind two weeks prior. I remember how precarious everything felt. How uncertain and completely out of our hands our future seemed. I remember how Matt met my not-completely-irrational anxiety with unwavering certainty—we would find our way.

Ten years later, it seems that history does repeat itself (stock market rumblings aside). The future feels just as precarious, if not more because I am wholly responsible for two lives. I cannot write that I now know everything works out at the end. That confidence was stripped away with the word obviously. The worst can and—though I still struggle to believe this—did happen. And this time, there’s no Matt to calm that not-completely-irrational anxiety with the certainty that we will find a way.

So, how to face a precarious and uncertain future? I don’t know. I’m still figuring it out, some days better than others. But I think, maybe, Matt was on to something a year ago today, when he showed up every day and kept doing the work. Kept believing and kept hoping. Maybe that’s all any of us can do.

October 13, 2017: Follow Up

Matt was due for a follow up appointment at Columbia on Friday, October 13, 2017. We were hoping to learn the results of the bone marrow test and rule out, once and for all, the incredibly unlikely and terrifying possibility of a secondary cancer.

Getting Matt to Columbia proved to be a challenge. Or, in truth, I thought getting Matt to Columbia would be a challenge. I hadn’t seen him walk much during the week. At Kessler, the physical therapists assured me that he was getting stronger, but during my visits, he didn’t move from the bed or wheelchair. I was worried that I would not be able, on my own, to help Matt into and out of the car and into and out of the wheel chair, and navigate him through the city.

Matt’s parents and the administrative team at Kessler agreed and helped me secure an ambulance to transport him from Kessler to Columbia—about a thirty to forty minute drive.

Matt’s mom and I arrived before the ambulance, which was late. We waited in the front of the building, worrying that the ambulance had gone to the wrong location or had gotten stuck in traffic.

Matt had not enjoyed the ride. He’d sat in the wheelchair, which had been locked into the back of the ambulance by clamps. He told us that the ride had been long and bumpy, that he’d been miserable and uncomfortable. He was, in short, furious that I’d ordered an ambulance to drive him, rather than driving him myself.

In truth, Matt hadn’t needed the ambulance, though I couldn’t have known that when I made the reservation. Sometime between the time I’d left him the night before and the appointment that afternoon, Matt’s recovery had made a huge leap. He couldn’t have marched long distances, but he was steady enough that he could have walked the few steps from the car to the wheel chair on his own. He was mentally present enough to understand where we were and what we were doing, to understand what would be safe behavior and what wasn’t.

I remember the guilt. The last thing I wanted was to make Matt feel incapable of doing anything, especially to make things easier for me. I’d misjudged how quickly therapy and time would heal him. How quickly he’d heal himself.

While we waited for the appointment, Matt made his mother and me sign a makeshift contract saying we would never again force him to ride in an ambulance like that. We signed the contract. A very tiny iota of relief had joined the guilt. Matt had used a logical thought pattern, created a logical solution to solve a problem that upset him. But more than that, there was something quintessential Matt in creating the contract—stubborn and a little funny and so confident. It was looking more and more likely that yesterday’s psychic was correct.

The doctor arrived and performed the standard physical and cognitive exams. Matt stood from the wheelchair and walked across the room. His strength had significantly returned. He was relatively steady. He spoke with the doctor and he made sense. I have no memory of how he performed on the cognitive tests, but I think that means there was nothing wildly alarming. The definition of wildly alarming had changed. No longer was forgetting a few words during the memory portion of the cognitive exam worth worrying about. The cruelty of brain cancer: how quickly the threshold changes.

The visit overall was inconclusive and frustrating. Matt’s temperature was low—again. When I asked the nurse whether I should be concerned, she said no and he was probably just cold. I accepted the answer, but a thread of doubt remained–again. We discussed our options for treatment going forward. One year ago today, every option was on the table—surgery, more chemotherapy, even possibly radiation. But Matt had to get stronger before anything could truly be considered. We’d have to wait and hope the tumor didn’t get too large in the interim.

Finally, we discussed the bone marrow biopsy. Negative for lymphoma. That should have been a reason to celebrate, except that in Matt’s case, the negative result told us nothing. As it turns out, lymphoma seems to disappear for biopsy purposes under the influence of steroids. The negative result was therefore deemed inconclusive and the biopsy would need to be repeated in two to three weeks when Matt had tapered off the Dexamethasone.

We left with no more information than we’d come. No explanation for the sclerotic lesions on his spine and ribs, for the hydrocephalus, or for the unexpected response to Gamma Knife radiation. But the doctor did say one thing to end the visit—and this was something we heard at the end of every appointment for the next four months as Matt continued to get worse and continued to defy every expectation.

You’re a mystery, Mr. Roth. Whatever is going on with you, is a mystery.

October 12, 2017: Psychic

We began to settle into our new routine on October 12, 2017. I stayed with Matt while he was out of therapy and took the time, while he was in therapy, to catch up on all the real life things that needed doing. Bills and errands and the administrative minutiae that had fallen by the wayside over the last few weeks.

That afternoon, however, I left a few minutes before Matt’s therapy actually started. I had an appointment at home with a psychic-medium to cleanse our house of any bad vibrations or bad energy.

When I told friends I was planning on a spiritual cleanse of our house, I told them with a half smile on my face. A part of me thought I was being ridiculous. But also a part of me desperately wanted to believe. A part of me knew there would never be an explanation for all that had happened to Matt and our family. But also a part of me was desperate to find a reason. So, did I really believe we were being haunted by bad energy? Yes and no.

I told Matt where I was going and why and cracked a (bad) joke about reading too many YA fantasy series. He didn’t laugh, and I didn’t expect him to—it had been a long time since he’d laughed.

Instead of laughter, he looked at me and said: I’m sorry. My sense of humor is messed up.

Hope began to glue together all the pieces of my heart that had broken over the last twelve days. I told him it was okay. I said he was getting better. And I believed it. The fact that he could recognize that his sense of humor was warped—or that my jokes were terrible—was a victory.

The psychic-medium arrived. I told her my husband was sick and didn’t go into specifics. She struggled to guess his ailment and warned me that she doesn’t like to speak about medical issues. She walked into our home and didn’t feel any bad energy. Instead of a complete sage burn, which she said would leave a lingering odor that might bother G and H, she did a sage spritz and talked about Matt and our family and our future.

She told me three things. One, that someone in my family had recently bought a timeshare in Florida—news to me, but ultimately true. Two, Matt would be home from rehab by the end of next week—this also proved true. Three, everything would be okay.

She stopped at the foot of the stairs, looked me in the eye, and said: You know, I really think he’s going to be okay.

Tears filled my eyes. It was all I needed to hear. Whether I believed in magic and psychics and messages from a spirit realm, didn’t matter. I chose to believe. I chose to believe those specific words. I chose to treat those words like truth. I chose, because Matt had taken a micro-step forward that day and because I’d needed to find another glimmer of hope in the darkness—however impractical and nonsensical—another reason to believe in Matt and the poliovirus and our happily ever after.