May 21, 2017: Other Patients

As it turns out, Duke and Hackensack had spoken and we learned the outcome of their conversation on May 21, 2017.

Hackensack was a firm “no” on giving Matt the infusion of Avastin. Not only were they strongly opposed to our plan, but they also encouraged Matt to go to Duke and push them for more information to make an informed decision.

My memory, as it relates to Hackensack’s exact questions, is a little fuzzy here. I wrote in a text to a friend that the Hackensack doctor emailed us to let us know he would not be administering the Avastin and urged us to ask more questions, but I cannot find that email. (Possibly the only email Matt or I ever deleted, apparently.) So I have only my memory to aide with this part of the story.

Here’s what I remember. Hackensack wanted us to ask Duke about the next step. What would happen if Avastin failed? What would happen if polio failed? How long would Matt need to stay on Avastin? How have other patients fared on/after Avastin? Ultimately, all of Hackensack’s questions boiled down to this: what was the plan for Matt if the polio virus vaccine did not cure him?

We did ask the Duke doctors and nurses these questions. And we heard words in the form of a response, but not an answer, which is a subtle but important distinction. Because what I remember most clearly is leaving the exam room or hanging up after the phone call and being just as in the dark as I was before. A lot of comforting words were said, but the responses were blurry versions of “we don’t know.”

Matt and I accepted “we don’t know” as an answer. Though it was immeasurably frustrating, we understood we were in a clinical trial with less than 100 other patients and sometimes even the doctors were taking shots in the dark. But the question I keep coming back to now is about the other patients. (Nothing specific, I do have a vague understanding of HIPAA.) We never got an answer to this question and I chalked that up to some rules about revealing results in clinical trials.

I don’t know, still, what the rules are about disclosing results or outcomes to patients. A few weeks before this date last year I’d found a website where cancer patients and caregivers could exchange information and stories. I found a woman whose story seemed identical to Matt’s: GBM, polio, recurrence, Avastin, and in her most recent post she was doing well, cancer free even. I sent her a message through that website. She never responded. She hasn’t posted again either.

There are a million reasons I’m writing our story, and this is one of them. For those patients who will come after Matt, who don’t get a response to the question about how other patients have done. Here is one story. But it is only one story. And there may be other stories that end differently. I hope there are.

May 20, 2017: Fear

May 20, 2017 fell on a Saturday. G had a dance recital and we went out with friends at night. The weekends were always a reprieve. The doctors and nurses weren’t in their offices. The radiologists and radiation machines were closed. We could take a break from the anxious waiting for return phone calls and emails and pretend cancer wasn’t all that we were thinking about. Without the medical stuff, the rhythm of the day was familiar and we could pretend we weren’t afraid.

Matt and I never talked about our fears. We never even acknowledged to each other we were afraid. Maybe Matt wasn’t. I truly do not know because neither of us ever brought it up. Fear was not an option. Fear meant defeat. Or worse, it meant that we didn’t believe in what we were doing.

The other day a storm ripped through my neighborhood. It snapped power lines, upturned tremendously sturdy trees, and caused widespread damage in a matter of about ten minutes. The storm was like nothing I’d ever seen before and some vague, ill-defined fear—one I hadn’t felt before Matt got truly, truly sick—made it hard to breathe.

After the storm, the kids and I stood on the deck to survey the damage. The sky had cleared and the humidity had broken. It was easier to breathe. We hoped to find a rainbow, but didn’t. Instead, we saw the sun glowing from behind the trees. The shape we saw wasn’t exactly a heart, but we decided to take it as one anyway.

In my about me page on this blog I said I didn’t have the words to explain what this feels like. That’s still mostly true. Before this post-hope year, I thought grief was simply sadness. I didn’t know how intimately grief was linked with fear. Because I now know that grief is waking up not knowing what to expect in the morning. It’s being stripped of the certainty that the storm will pass without toppling any trees. It’s being unable to hide from that panicky, fluttery feeling because even the weekends have an unfamiliar rhythm.

Last year, Matt and I avoided fear. Avoided talking about fear or even acknowledging that we were afraid. This year, I cannot avoid the fear. It is as relentless and unforgiving as the storm that swept through my neighborhood. And in this post-hope, grief-stricken year I can no longer pretend there won’t be another storm, and I can’t ignore the possibility that it might leave scars with no rainbow in view. All I can do is acknowledge the fear, look forward, and make the best of the light shining through the dark clouds.

Because fear doesn’t have to mean defeat. Fear is not the opposite of hope.

May 19, 2017: Still No Answers

Forty-eight hours had passed since our appointment at Hackensack and our deadline was creeping uncomfortably close. The morning of May 19, 2017, Matt gave up hope that Duke would convince Hackensack to administer the Avastin. As of 10:30 a.m., the two doctors hadn’t connected.

Matt emailed the clinical trial nurse at Duke and asked her to make him an appointment for Tuesday or Wednesday of next week. The clinical trial nurse wrote back in the early afternoon and agreed maybe it was time to schedule an appointment at Duke, “just in case there is continued push back from [Hackensack].”

I forewarned that the story gets tricky to tell, that there is no villain and that in many ways, I am an unreliable narrator, tainted as I am by judgments and perspectives, and now, retrospection. It’s the retrospection about these days that is tripping me up more than it has in other posts. I’m stumbling attempting to explain how we perceived the situation between Hackensack and Duke then, because I don’t know if I agree now. Hindsight and all that jazz.

Then, we believed we were the unlucky, forgotten patients caught between two big, clashing egos. It seemed to us that the Duke doctor couldn’t be bothered to call Hackensack. It seemed to us that the Hackensack doctor refused our request because he didn’t want to be Duke’s puppet, because he couldn’t see the bigger picture Duke was drawing and wasn’t willing to try.

Now, I can’t decide if I agree with our perception all those months ago. With respect to Duke, we knew we weren’t the only patients in the world. We knew the the doctor we were nonstop calling had back to back to back appointments and more patients than hours in the day. But we couldn’t help feeling abandoned. Was that fair? I still think yes, but I’m biased. With respect to Hackensack, knowing how spectacularly the polio virus would fail, knowing how Matt’s tumor would lash out and spread, was Hackensack right to try and steer us away from Avastin? Were we wrong to perceive ego in a doctor who maybe was simply being practical, who had seen patients like Matt and was trying to save us from walking toward a nightmare wearing a blindfold made of hope?

I’m going to end that line of questioning there, though I typed and deleted a dozen more similar questions. I said in my post on May 4th that I had made a choice not to question our decisions and I’m making that choice now. Because, I don’t know whether anything would have turned out differently if we’d gone the route suggested by Hackensack, and it’s not like I can go back in time anyway (especially since, despite my comparisons, this isn’t actually a YA fantasy novel.)

Matt went ahead and made the arrangements to fly to Duke on Tuesday of next week, though he still held onto hope that the doctor at Hackensack would change his mind after speaking to the doctor at Duke. That night, as far as we knew, the doctors hadn’t spoken.

On May 19, 2017, we were in the fight of our lives against a Goliath of a disease, and to us, it seemed as if the two doctors who were supposed to fight alongside us, had forgotten all about us.

May 18, 2017: Standstill

Matt woke up on May 18, 2017 exhausted in every sense of the word. He’d been working long days, giving presentations, attending twelve hour long meetings, and missing time with the kids. He didn’t have the energy or the time to negotiate the dynamics of two doctors who couldn’t seem to get on the same page.

A lot happened in yesterday’s post in terms of moving medical parts. The summary for the TL;DR crowd is this: Matt needed Avastin in less than a week to keep from heading down that dark road we’d traveled in April, the doctor at Hackensack refused to administer the Avastin for a number of reasons, and Duke had not even managed to return Hackensack’s phone call to discuss the treatment plan or explain why Avastin was crucial for Matt.

When Matt and I left the exam room at Hackensack the day before, we went straight to a secluded corner of the cafeteria and called the clinical trial nurse at Duke. First, we confirmed that Matt did get the cure-delivering dose. (Because, priorities.) Then, we told her we needed help, either convincing Hackensack, finding another local oncologist who would administer the Avastin, or getting a last minute appointment at Duke. And, then, we asked the real question burning in our minds: Why hadn’t Duke returned Hackensack’s call anytime during the last week? We recognized that the Duke doctor was busy, but we were on a deadline she had imposed, we were trying to get the medication she had sold us on two weeks earlier.

The clinical trial nurse calmed us down, assured us that they would get in touch with Hackensack, clear up the confusion over how Avastin was being used in Matt’s case (not as a treatment, but as a steroid), and everything would be fine; no need to book last minute flights to North Carolina. We believed her.

But twenty-four hours later, on May 18, 2017, Hackensack and Duke had not even connected. No one was returning our calls or responding to our emails. We were in a virtual standstill, feeling all but abandoned, and desperate to get a plan—any plan—on the table. One thing Matt and I were terrible at, in life in general, was waiting. But there was only so much we could do from a distance without also destroying any goodwill we’d built up with the doctors. We had to wait, and stress, and text each other these poetic thoughts: Man what the freakin heck.

By the end of the day we still hadn’t heard a word. From anybody. Not even a quick email update. In the moment, it seemed as if the day had been a frustrating, unproductive waste. But, in looking back, I see that two important things did happen a year ago today while we waited for Duke and Hackensack to simply have a conversation.

One, those bathroom window blinds were (finally) installed.

Two, I made a phone call that would shape the entire rest of our year.

Remember on April 3rd I wrote about doctors who treated Matt with their heart and soul, who cried with me the day the final MRI was read…well, their part in the story is only just beginning. Because a year ago today, I called Columbia.

Not the most eloquent text I’ve ever sent, but there’s what frustration and feeling abandoned looks like in real time.

May 17, 2017: Phase 1 Clinical Trials

And now a return to the main storyline.

At 12:08 on May 17, 2017 I sent this text message to Matt: How are you?

Earlier that morning I had dropped H off at a friend’s house and met Matt at Hackensack. He was already in one of the smaller exam rooms when I arrived. We weren’t there for an exam or test results or treatment plans. Very honestly, we were just there for protocol, to check off the correct boxes, to say we’d listened to the risks so we could sign our names on the dotted line and get pointed in the direction of the Avastin.

We had to wait a while. Annoying, because Matt had to get to work, but ultimately not surprising because the doctor was squeezing us into his undoubtedly jam-packed schedule.

I remember Matt and I were laughing about something when the doctor finally walked in. He took a seat across from Matt, diagonal to me, and proceeded to smash through the reality I’d built for myself, the one where Avastin’s long list of side effects didn’t really apply to us because Matt was only using Avastin as an uber-steroid, not as a treatment. He told us Avastin only made MRIs look better and that it concealed ugly truths. (Too complicated to explain but relevant to note for later.) He said if we chose to continue with Avastin, we’d likely close the door on any surgical options. He suggested surgery and/or another immunotherapy, Keytruda. We thanked him for his concern, but reminded him that we didn’t want a treatment, we wanted a cure. We wanted to be free of cancer forever.

His response was that he wasn’t even sure if we’d gotten the same dose that had cured the first patients.

At this point, I need to pause and explain something about Phase 1 clinical trials. Phase 1 clinical trials are dose finding studies. That means groups of patients receive different doses of a trial medication in an effort to determine the highest and lowest doses patients can tolerate without adverse side effects, while still receiving the benefits of the medication. The Polio trial was Phase 1.

The doctor at Hackensack wasn’t sure if Matt had received the dose that had cured people, or if possibly he’d been in a group that had received a slightly smaller dose. This is about the time my ears started ringing. Because of course Matt had gotten the dose that would cure him, right? He was in an experimental trial but he wasn’t an experiment, right? (This is also an idea I will come back to frequently, especially in the winter months.)

We did confirm later that afternoon that Matt had received the cure-delivering dose. PHEW! But it’s relevant that the Hackensack doctor didn’t know. Matt and I had  given Hackensack Duke’s information a week ago. The doctor should know. He would have known, if Duke had called him back. Hackensack had tried to reach out but Duke never returned the call.

For all the reasons he cited, because he believed he’d be harming Matt if he gave the Avastin, the Hackensack doctor refused our request. He would not give Matt the drug needed to keep the swelling and bad days at bay. With less than a week until he needed an infusion, our local doctor, the man who’d first given us hope, refused to help, and threatened to demolish our carefully built world of hope in the process.

So when I texted Matt to ask how he was doing, shockingly, I wasn’t checking in on his physical health. I was checking in on his emotional wellbeing. Was he upset? Had he lost hope in polio? Was he at all having second thoughts about the path we’d chosen?

Matt’s response to my text message was: Fine. Wut’s up?

Unwavering, unfaltering, undiluted hope.

May 16, 2017: In This, No Matter What

May 16, 2017 was relatively uneventful. Matt had another early morning so he didn’t see the kids before he left. Duke decreased the steroid by another .5mg. H had soccer (or t-ball, it’s hard to tell in the picture what exactly he’s doing) and G spent her afternoon practicing cartwheels on the sidelines. By all accounts, it was an easy day.

On days when I have less to write about, I tend to spend more time cycling back through emails, falling into a black hole of old inside jokes and past troubles that now seem trivial. But no matter how many hours I spend in the past, two life-changing, mid-May conversations remain lost. I can’t find any electronic record of the exact date that they occurred or even evidence that they occurred at all. I have only my imperfect memory to remind me of the two starkly different talks, separated by eleven years, a mortgage, and two babies.

The first lost conversation: mid-May 2005, when I casually…awkwardly…asked Matt if he would introduce me as his girlfriend to his friends if we ran into someone on the street. He laughed, teased me for being so awkward, and said, sure. I mentioned back in early April that it took Matt about a year to admit he had feelings for me. I also warned that our story was not a sweeping love story and noted that I was now the sole keeper of that quirky story. Turns out, neither of those statements was exactly true. Shortly after that post, a friend of Matt’s sister shared a few of her favorite Matt memories and one of them was Matt’s “futile resistance to falling in love with Elaine.”  For a reason I can’t pin down, that line makes me endlessly happy (and sad, because as G put it so eloquently the other day, “I’m always happy and sad at the same time.”). It makes me think there was something sweeping about our story, something inevitable and meant-to-be and bigger than us.

Eleven years later in mid-May 2016, on the same couch, in a different state, with two toddlers sleeping upstairs and a dog we couldn’t train sleeping by our feet, we had another conversation. Our usual banter had been off. We were short-fused and on edge with each other. We weren’t us. On a night in mid-May, weeks before Matt was diagnosed with a fist-sized tumor in the personality sector of his brain, I sat Matt down and told him something was wrong with us. He agreed and said he didn’t know why he felt so off lately. I told him I would do whatever I could to fix us. I told him that I was “in this, no matter what.”

It’s only in writing today’s post that I realize I was both wrong and right back then. Wrong, because the reason we weren’t “us” wasn’t because our relationship had hit bumps in the road. And right, because I was in this, no matter what.

In mid-May 2005, I wasn’t sure if Matt wanted to define our relationship, but I had hope. In mid-May 2016, I wasn’t sure we could save our relationship, but I had hope. In mid-May 2017, I just had hope.

May 15, 2017: Subplots

Matt spent the day in the city on May 15, 2017, at a long, all day business meeting that didn’t wrap up until well after the kids’ bedtime. He didn’t see G and H before he left for work, and he wasn’t thrilled about missing a night with them (although he didn’t mind eating sushi in the city as opposed to Mother’s Day leftovers for dinner). But he couldn’t miss this crucial meeting, and explaining why leads me to introduce a topic I haven’t touched on too much just yet.

In any good novel, there’s a main plot and a handful of subplots. If the story is told well, the themes from the subplots enhance the main plot. If the story is told really well, the subplots are wrapped into the main plot by the end.

The main plot of our story was our battle against Glioblastoma, but weaved into our days, both good and bad, other story lines unfolded. The bathroom window blinds (still not installed), for one. How G and H responded and reacted to all the ups and downs, for another. And this one: the sale of the company that had been in Matt’s family for three generations.

When I met Matt on February 5, 2005 at a club called Glo in Manhattan’s Meatpacking District, he handed me a card and told me he owned his own company. He was in the glamorous business of selling toilet seats. (Toilet seats with hands free automatic sanitary covers, to be exact.) On our first date I learned that he decided to start his own business after he graduated college. He’d turned to his dad for a job and promptly got rejected because his dad didn’t hire college graduates with no experience. (That may be a nearly direct quote…twisted probably by Matt’s memory.)

A few months after we started dating, and with a few years of business and entrepreneurial experience under his belt, Matt did join the family business. As he climbed the corporate ranks, I watched his passion for the company grow. He’d come home from work charged up, excited about a new idea or a new employee or a new project. His dreams for the family business were limitless.

A while ago I mentioned that Matt worked long hours pre-cancer diagnosis. What I didn’t say was that he worked those hours to grow a company that was a part of his heart and soul.

When Matt was diagnosed, when the dust settled and the horror of his disease came into full view, Matt and his father made a decision based on hard facts rather than ambiguous hopes. They thought about who would run the company if…. They were practical in a way I never could be, and how they found the strength to look at the stark truth, I don’t know. They decided to sell.

But then, Matt handled the first treatment well and his genetic markers were so promising. He got into the polio virus trial and the nurses and assistants congratulated him. The doctors said he’d see his kids graduate high school. When buyers came into the picture, Matt could see a future for himself at the company, one in which he could work with some of the brightest business minds he’d ever met to turn his vision for the family business into a reality.

Let me emphasize the most important part of what I just said because it may have gotten lost in this long post: Matt could see a future for himself. That’s hope. That’s that unwavering belief of his that never, not once, faltered.

The meeting on May 15, 2017 was just a first step, and for purposes of reconstructing this year, an introduction to this subplot. A subplot that, like the main plot, is intricately stitched with hope.

May 14, 2017: Mother’s Day

On May 14, 2017, we hosted family for a Mother’s Day brunch. Matt ran to the grocery store to pick up the tomatoes I forgot. He texted me a bitmoji of himself holding flowers. It was our last Mother’s Day together.

The concept of lasts pops up on my Facebook feed every now and then, but almost always around Mother’s Day because it applies, usually, to kids. It’s the idea that it’s easy to remember and celebrate a baby’s firsts—first steps, first words, first smiles—but harder to remember the lasts. Those lasts sneak past your awareness, disguised to look like any other day. It’s only in retrospect, days or weeks or months later, when you realize that toddler hasn’t mispronounced I love you in a while, or that baby hasn’t fallen asleep on your chest lately. Usually, by the time you realize a last has passed, it’s too late to mark the date and the details are hazy. The exact way their voice sounded that last time has melted into the landscape of every other day, the way it felt when they tucked their head into the crook of your neck is a ghost of a memory against your cheek.

I often think of our lasts when looking back on our year in hope. I didn’t know it would be our last Mother’s Day together. Or birthday or anniversary or random Tuesday in June, for that matter. I didn’t know that I needed to savor every moment, pause the lightning fast speed of the day and commit every smile and bad joke to memory because we’d never get another.

In his book about grieving the death of his wife, C.S. Lewis wrote about the things he missed most, what he most wants back but could obviously never get. He ended the list with “the tiny, heartbreaking commonplace.”

I don’t remember the last time Matt smiled at me with that twinkle in his eye, the last time he played basketball with the kids, or the last time we sat side by side on the couch and texted funny bitmojis to each other. I wish I’d paid more attention to the lasts. But hope is a tricky thing for that reason. Too much hope and you don’t think: I should pay attention, just in case. Too much hope and “just in case” doesn’t enter into your vocabulary.

Today, May 14, 2018, marks 100 days. 100 days of firsts I never imagined. That means as of May 14, 2017 Matt and I had only 265 days left together. 265 lasts that I didn’t pay enough attention to.

IMG_0636.jpg

Post-chemotherapy hair loss bitmoji

May 13, 2017: Disingenuous

In theory, I can write about May 13, 2017 without too much trouble. I remember what happened one year ago today without the help of text messages or emails. I can look up the dose of Dex Matt was scheduled to take. I know where we went out for dinner, which friends we saw, and the plans we made for September. No shortage of material. And yet the words aren’t coming today. If I’m being honest, I’ve been struggling to find the words to tell this story for the last few days.

I’m not completely sure why. A year of daily posts is an ambitious goal and maybe I should have set my sights a little lower. But I don’t think the frequency of posts is the issue. There are days in the coming months that I know will almost write themselves. Interestingly, they are the toughest days to have lived through. And this makes me think that the problem with the last few days lies in living this post hope year.

I promised honesty, but it feels disingenuous to write about those May days that were easy and ruled by hope knowing what I know now. It’s hard to look back on the person I was, the things that Matt did, the smiles on the kids’ faces without seeing that darkness coming for us.

The other night I spent forever trying to write the post about decreasing the steroid, how it felt like a triumph over the cancer. An hour before I started that post, I sat with G and H in Matt’s closet looking at all the pictures they’d drawn him over the years, the ones he’d deemed special enough to save. And apparently, I cannot write smoothly about how much hope we had a year ago today after tucking in two heartbroken kids. So I’m not going to try.

A year ago today, G had a dress rehearsal for her dance recital the following weekend. I showed up at the rehearsal with only the first of the two costumes she needed. I called Matt and he bailed me out, brought the other costume and the piece of the first costume that I’d dropped on my way out the door. May 13, 2017, there was so much hope. So much taking for granted that I’d always be able to call him and he’d always come to bail me out.

A year ago today it was not Mother’s Day, so I don’t have to write that post yet. And I don’t know how today, Mother’s Day in 2018, will go. I assume it’ll be hard, for me, for the kids, for Matt’s parents and family. But I know that however hard it is, we are all together, we’re all getting through this together, and that if one of us needs someone to bail them out, they’d have someone to call.

I know Mother’s Day is a hard day for a lot of other people, too, for a dozen different reasons. So, for anyone following along my post-hope journey who is struggling today, I do have one hope to share: I hope you can find a reason to smile today. Sending love and support to anyone who needs it today, and really everyday.

May 12, 2017: The Breath I Didn’t Know I Was Holding

Ten days into our upswing, on May 12, 2017, Duke advised me to decrease Matt’s steroid dose and to monitor for a reaction or any return of symptoms. Easy. Little did they know, I’d never stopped monitoring his reactions; I was constantly hyper-analyzing all of him.

I probably studied every word and dissected every text message he sent on May 12th more than usual. And best I can tell, even now in retrospect, I came up empty. He seemed unchanged from the day before. Which meant only that the Avastin was working as promised to keep the swelling in his brain at bay.

I didn’t see it that way, though. Decreasing the steroid without increasing symptoms felt like a triumph. For some reason that was all my own, I’d linked Avastin and the Polio virus vaccine. In my mind, if Avastin was successful, then the Polio virus vaccine must be also. And if Polio was working, then Matt was closer to cured than ever. (I started writing about logic equations and if P then Q statements, but it’s Saturday morning and no one wants to go back to middle school math.) The point is, Avastin and Polio were completely independent of each other. Whether one worked did not impact whether the other worked, and the only link between them was our hope.

A few times now I’ve compared our story to fiction. So, in keeping with that theme, and assuming I’m writing myself as the protagonist in a Young Adult (YA) fantasy series, this would be the point where I’d write: I let go of the breath I didn’t realize I was holding. This cliche line in many YA novels, including the one I started yesterday, is usually found at the end of a scene, after the threat has passed, when the protagonist is ready to move forward. Many critics take issue with the line. But there’s a reason it’s so overused.

Sometimes breathing isn’t intuitive. Sometimes, when waiting for the threat to pass, it is possible to forget to truly exhale.

On May 12, 2017, I don’t know if I remembered to take more than shallow breaths as I watched for changes. Matt and I talked about Memorial Day weekend plans. We ordered in sushi and watched Jeopardy. Not glamorous. Not particularly memorable, either, except for the fact that nothing happened. The threat had seemingly passed. We could move forward. And that night, thanks to some crooked logic, I released the breath I didn’t know I was holding.