May 31, 2017: Recurring topics

Yesterday I said that collecting all the materials Columbia needed was a two-day process. May 31, 2017 was day two.

Now that Columbia had some of Matt’s medical records, we were permitted to schedule an appointment for that initial consultation. And by that, I mean they told us the one day and time they had available—12:30 p.m. on Friday, June 2nd—and we could take it or leave it. That sounds harsh, but it’s the reality of this world we’d entered. The doctors were already over scheduled. Often we made an appointment knowing that the doctor was double booked for that time. What choice did we have but to plan to wait for a doctor who somehow had to be in three places at once?

We confirmed the appointment for Friday, June 2nd and I sent an email to G’s school letting them know I could no longer volunteer for an event on that day. I was upset about the possibility that G might look around and not see her mother, but I’d waged this internal tug of war with myself on May 1st—when I didn’t go to the appointment at Duke—and knew how the battle would end. There’d be guilt no matter the choice. And I needed to be with Matt.

Matt’s response to my conflict: “I can go by myself too altho I like hanging with you for stuff like this.”

The rest of the day I spent driving back and forth to Hackensack and the UPS store to make sure the CDs arrived at Columbia in time to be reviewed by the doctor. Because I was in the car, Matt took over the final task of getting the slides to Columbia. Ninety minutes, three phone calls, and one broken fax machine later he managed to get approval to have the slides overnighted.

A lot of topics I’ve brought up in previous posts return in this one. The feeling of being torn between the kids’ needs and Matt. The idea that we had no control over the schedule. And the notion that it often felt like the people and institutions we counted on weren’t always on our side.

Another topic creeps into this post. One that I’ve written about often and still feel as if I haven’t captured correctly with words: the way GBM stripped Matt of his humor and his charm, his smile and his spirit.

The text Matt sent to me is not particularly romantic. It’s not particularly memorable. But I’m grateful to have it in writing. Because about six months after he sent it, it often felt like the opposite was true. That Matt did not want me there. That I could say or do nothing right. That I made his day worse instead of better.

It’s excruciatingly difficult to admit that. And it’s nearly impossible not to admit that without self-doubt crowding my thoughts. Maybe it wasn’t just the tumor. I wasn’t perfect: I lost patience, I lost strength, I even lost hope. Maybe he was just angry about it.

Logically, I knew, and know, that the tumor had stolen so much of the real Matt and the real Matt wasn’t the one snapping at me. But logic doesn’t always prevail. Even in post-hope. (Especially in post-hope?) Sometimes the cuts his words left eclipse any kind of logic and all I feel is the sting and the guilt and the doubt.

But then, our story will lead me to a day and a text like the one he sent on May 31, 2017, and I’ll remember the real Matt, the one that left notes for me to find when he went away for work, the one that always wanted to hear a funny story about the kids, the one that never expected perfection.

Telling our story lets me remember the real Matt, the one that liked “to hang with me for stuff like this.” And some of that ache from the worst days subsides.

It seems appropriate that this topic appears today, on the last day of May, a month designated to Brain Cancer Awareness. Because when I start doubting our story, and wondering why I ever believed a stranger might care enough to read and follow along, I think of how much in January I needed to hear I wasn’t the only caregiver feeling the sting of words and drowning in self-doubt.

So my hope on this last day of May is that in telling our story, I’ll bring a grain of awareness, and maybe, hopefully, another caregiver will read this and remember their own good days and some of their ache will subside, too.

 

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May 30, 2017: Gritty mechanics

Matt and I sent almost fifty text messages to each other on May 30, 2017. We emailed. We even had a phone call thrown in for good measure.

We had plans to make, logistics to coordinate, and schedules to discuss.

Before the long weekend, I said we had one glimmer of hope and we grabbed for it. That sounds easy—and somewhat idealistic—and completely ignores the fact that in order to grab that one chance of hope, we had to fill out paperwork, and beg for overnight shipping, and spend hours waiting on hold. We learned—I learned—that the gritty, all-too-bureaucratic mechanics of grabbing hope look a lot like the daily tasks of an administrative assistant.

On May 30, 2017, we started the two-day process of collecting everything Columbia needed to schedule an initial consultation.

I think I’ve mentioned that the process is tedious. We needed medical records faxed or emailed from Duke, Hackensack, and Morristown. We needed MRI CDs shipped from Hackensack and Duke. We needed pathology slides. (What’s a pathology slide? Without getting too technical, after surgery or biopsy, a piece of the diseased tissue is removed and placed into a glass slide for examination under a microscope. The slide helps confirm a diagnosis. At least it did in Matt’s case in June 2016.)

The slides were the hardest to track down. They were made in Morristown, but at some point, while we were gathering second opinions in 2016, we sent slides to Sloan, Hackensack, and Duke. I vaguely remembering being warned against sending out the slides to too many different doctors, but I no longer recall why that was problematic. That half-remembered warning prompted a dozen text messages and a sarcastic comment or two.

The words for today didn’t come quickly. I reviewed all the emails and text messages, came up with fragments of memories that I pieced together into an account of the day, and then…started scrolling Facebook. The story felt flat. Maybe it’s because I’m writing about data collection, but I think it’s because I can’t stop thinking about where we were two years ago today.

I have a faint idea of how I’ll handle the posts in the upcoming days, to share our 2016 story and remain true to 2017. For now, there’s not much to share about 2016, except this: we weren’t in a good place. We were falling apart and we didn’t know why.

We couldn’t guess the impossible life we were about to enter. We couldn’t understand why it felt like we were already hanging over some edge with no safety net below. I don’t know exactly what we did on May 30, 2016, but I remember the heartache and shame and terror of believing my marriage was dissolving.

When I look back at May 30, 2017, the frustration of trying to get medical release forms emailed, records faxed, and slides overnighted has a prominent spot in my memory. But I also remember emailing pictures of H back and forth, and spending too much time discussing which one was the best to represent him at his pre-school graduation. I remember Matt forwarding me an email he sent to a new friend and rolling my eyes at his recycled jokes, which he was proud to share with a new audience. I remember thinking last year at this time that Matt would have had little patience for graduation pictures, or fifty text messages, or new friends, and look how far we’d come.

On May 30, 2017, I remembering looking back on where we’d been the year before and being grateful for how far we’d come, for how much we’d fought and how much we’d regained.

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No shame in admitting I’d be a terrible administrative assistant.

 

May 29, 2017: Control

If everything had gone exactly to plan after the polio infusion in March, Matt and I would have been on a flight to North Carolina at 4:30 p.m. on May 29, 2017. Instead, we were debating what to do with two kids in less than ideal weather.

Back in March, when we committed to the polio trial and monthly MRIs at Duke, we made an appointment for a MRI early in the morning of May 30, 2017. It was the only appointment available during the timeframe the polio trial required us to have another scan. Which meant, flying the night before. Which meant, missing the Memorial Day party at the town lake with the kids.

Not a catastrophe, but I hated to think of the kids missing anything because of cancer. However much I wanted normal for myself, I wanted it one hundred times more for them.

When our MRI schedule changed to accommodate the Avastin infusions, I’m sure a million thoughts went through my head at the same time. One of them, strangely, was a sigh of relief. With the new schedule at least we could take the kids to the party with their friends. At least we didn’t have to disappoint them.

When the day rolled around, the sky was overcast and the temperature was unseasonably cold. Instead of going to the lake we decided to go to Chuck E. Cheese with some friends. No party.

When I sat down to write this post, I wasn’t sure what my point was. What about the prospect of missing the Memorial Day party with the kids upset me for weeks after we made the original May 30th appointment, but then given the chance to go, we chose not to because of bad weather? Why wasn’t I more upset that we didn’t take the kids to the Memorial Day party after all the angst I’d put myself through?

The answer is control. When we made the May 30th appointment, we had virtually no choice in the matter; we had to miss the Memorial Day party. When the schedule changed, it became our choice again. We had control back.

This year, I took the kids to that Memorial day party. Our first without Matt. The weekend brought a lot of firsts. First time I had to remove a drowned chipmunk from the pool, something Matt always did while I made disgusted faces from a distance. First time I had to tackle the issue of lawn damage/maintenance by myself, something Matt always did while I wore sandals and stayed out of the mud. It was the kind of weekend when I felt the waves of grief coming again and again, the kind of weekend when grief could have wrested away control of the story.

But it didn’t. The chipmunk was removed, with a disgusted face. The mud was trampled through, in the sandals (next time, sneakers; live and learn). The party wasn’t skipped, even though looking around sometimes all the kids and I could see was what was missing.

Last year, for a weekend, we regained control of our story. We’d lose it, again, obviously, to doctors and schedules and medications, but we had it then. This year, we also nearly lost control of our story. Somehow we didn’t. I’m sure we will—grief doesn’t like to be ignored—but what I’ve learned in the past year is that’s okay. Losing control isn’t permanent. There’s always a way to regain control of your story.

May 28, 2017: You Okay?

I sent this text to Matt at about 8 p.m. on May 28, 2017: You okay? This was after another easy day of friends and grilling and acting as normal as possible.

When I think about May, I think about Avastin and filling out forms and cursing doctors (sorry, but true). In my memory, May was symptom free. It’s only in re-reading the texts between Matt and me that I realize that wasn’t quite true. A single symptom appeared near the end of May, one particular indication that something was wrong.

When I say something was wrong, I’m being intentionally vague. The desire for honesty, to give an open account of our fight against an aggressive brain tumor, is balanced against the desire to preserve Matt’s memory. There are parts of this story that I haven’t decided how to share, or whether I should share at all, and I didn’t think I’d reach any of those parts yet. Honestly, I’d forgotten how early this symptom appeared and I thought I’d have more time to decide. For now, for purposes of May 28th, I’m going to remain vague. Because this early in our story, I didn’t know (and truthfully still don’t know) if what I’d noticed was a symptom of tumor growth, a side effect of Avastin, or my own overdramatic brain working in overdrive.

When I asked Matt about what I’d noticed, he had an explanation. He told me everything was fine, and he felt fine, and I shouldn’t worry. But he added, as he always did, that I was free to tell the doctors and nurses anything I wanted.

So I told them, at every appointment, with a sideways glance toward Matt and the admission that I couldn’t confirm something wasn’t quite right; It was only a feeling I had because I knew Matt’s patterns of behavior and this didn’t fit the pattern. The nurse or doctor would ask Matt and he’d tell them everything was normal and the issue was dropped by us all. Until the next time. At some point I started qualifying my concerns with “I may just be the crazy wife, but you should know…”

Because I would have rather been the crazy wife than the wife who’d missed the symptom that meant the difference between life or death.

It’s hard not to look back and wonder if this was that life or death symptom. It’s hard not to jump right back into the days when one MRI revealed a tumor in the base of Matt’s spinal cord and another revealed the tumor had infiltrated the bones of his spine, and all I wanted to do was scream at all the doctors who hadn’t listened to me every time I started a sentence with “I may just be the crazy wife, but…”

I’ve said before that I wish there was a way to soften the sharp edges of this story. I have a feeling this post, with all its vagueness, may have more of a jagged edge than I realized when I started to write (whoops). So let me try and soften this particular sharpness a little by telling this truth: I don’t know if what I saw on May 28th was tumor or Avastin or my overdramatic mind. I only know Matt and I had a good day on May 28th; the first thing I remember about the day is not the symptom, but the fun. And I can’t regret any day like that; I can’t regret anything we did or didn’t do that led to other days like that, either.

May 27, 2017: Saturday of MDW

May 27, 2017 was a Saturday and the beginning of a long holiday weekend. With doctors’ offices closed for Memorial Day weekend, the goal, for me, was to keep us as busy and as normal as possible.

I made plans with friends in Connecticut. The kids ran around the backyard playing on the swing set. Matt talked sports with the guys and I drank one too many glasses of Rose on the deck with the other girls. It was an easy day, mostly free of any kind of cancer talk, with friends who we loved like family.

As I’ve said before, on easy days I tend to reach back further in time, re-reading what happened on May 27, 2016, 2015, etc. But this time, I ended up reading emails that related not to the date, but to the day. The first unofficial day of summer, the Saturday of Memorial Day Weekend.

And the emails were just funny. The pictures were fun. The videos made my heart swell. We hosted BBQs with old friends and threw parties with new friends. One year we tried to do both. We crafted signature cocktails, gossiped in lawn chairs, and ate ice cream cake. Matt always wanted to have (own?) a holiday. He wanted our house to be associated with some celebration, and Memorial Day weekend was the one we tried.  Unfortunately, (or fortunately because we’ve still never peeled the stickers off the playroom floor from our 2013 attempt) we never became known as the Memorial Day party house. But it was fiercely fun to try.

Saturdays are generally difficult for G. She calls them Satur-boo-days. Her dislike stems from the fact that February 3, 2018 was a Saturday. When she first told me she hated Saturdays I thought she’d inherited a flair for the overdramatic from me. But, as it turns out, she’s not alone in hating a particular day of the week. Many of the widows in my Facebook group can’t face Tuesdays or Thursdays each week because it’s the day they lost their partner.

Which led me to examine why Saturday doesn’t bother me. It didn’t take long to figure it out. I don’t feel like I lost Matt on Saturday, February 3. February 3rd was the day he took his last breath, but I feel like I lost him a little Monday, June 6, 2016 and Tuesday, September 12, 2017 and Friday, January 19, 2018, and everyday that came after. Like I’ve said before, brain cancer is brutal in that way.

But looking at this Saturday in particular, the Saturday of Memorial Day weekend, I couldn’t hate this day, anyway. Because, what I found, overwhelmingly, when rewinding time to the last Saturday in May, was joy. And friendship. And that there’s really no need to have that last glass of wine.

I hope one day Saturdays are easier for G. I hope one day she’ll be able to remember February 3, but still find all that I’ve found and more in looking back on this day. (Especially about that last glass of wine.)

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May 26, 2017: Snapshots of Memory

I mentioned on May 18th that I called Columbia to ask about Avastin. In that call, they didn’t reject us outright. The new patient coordinator said the doctor might be willing to do what we asked, but she’d need to review the medical records and meet us first. No promises, but a glimmer of hope.

I didn’t follow up again until May 26, 2017, until after every other institution we’d approached had refused to help.

We’d left Columbia as the last option for a few reasons. It was in the city, which isn’t always a pleasant drive. They didn’t possess any of Matt’s medical records, and the process of obtaining, faxing, and shipping reports and MRI scans that are filed in various departments of three different East Coast hospitals (Morristown, Hackensack, Duke) is a tedious, frustrating endeavor. And, honestly, we didn’t want to meet yet another doctor, deal with another ego, if we didn’t have to.

I know exactly where I was the moment Columbia called me back for the first time and I remember exactly where I stood in the kitchen to fill out the new patient form on May 26, 2017. It’s funny to look back and have such a vivid flash of memory of a moment that, at the time, seemed relatively insignificant. I’d filled out a dozen similar forms and I couldn’t, and didn’t, know the vital role Columbia would play in the coming months. But some part of my memory took a snapshot of receiving that phone call and filling out that form in a way it didn’t for Hackensack or Sloan.

My memory is full of these snapshots, moments that at the time seemed as routine as filling out paperwork for the umpteenth doctor. The first moment I locked eyes with Matt across the dance floor at a random club in the Meatpacking District. The moment I set down a book I was reading, turned to Matt, and said, “I bet I can write one of these,” and he said, “go for it.” The moment we met a doctor with inexhaustible compassion at Columbia who happened to have the availability to take on a new patient.

Plenty of other moments I wish I remembered are gone. But these snapshots remain, and it’s only in looking back can I see that these were the moments when we’d started down a new path without realizing it. They are the moments my heart chose to remember even though my brain overlooked them as ordinary. They are the moments that formed the outline of our story. I’m not sure what to make of that except it makes me believe our story was meant to be told. Maybe that’s how memory works for all of us, and all our stories are meant to be told.

On May 26, 2017, we had one local hospital left. One final institution that hadn’t yet rejected us regarding Avastin. We had one glimmer of hope and we grabbed for it.

May 25, 2017: Partner, Not a New Doctor

On May 25th, Matt emailed Duke and asked if they had made any progress on their promise to help find a doctor in the NJ or NYC area. He received this same day response: Please identify a site and contact them regarding if they would provide the Avastin infusion. Once you identify where you would like to go then we can assist with setting up.

Slightly formal. Slightly harsh. Slightly like they were breaking their promise and we’d been abandoned again.

With the holiday weekend coming, we had very little time to spend precious minutes complaining. We dove into our new mission: find a local doctor to administer Avastin. (Although, ever the hopeful optimist, Matt sent one last email to Hackensack pleading our case. It was a no. Points for consistency, I guess.)

We had three options. Columbia, who was unwilling to commit to anything until they received and reviewed all of Matt’s medical records and established a baseline relationship. Morristown Medical Center, where Matt’s first craniotomy took place, but they no longer had a neuro-oncologist on staff. And Sloan, specifically the doctor we’d seen in 2016 for a second opinion, the one who’d told us flat out that Matt only had 18 months and we should get our affairs in order. I’ve mentioned him before, mentioned how I viciously opposed dealing with anyone whose narrative didn’t match the one I’d written for us (the one that had us featured on a 60 Minutes special alongside all the other GBM survivors). On May 25th, I begrudgingly called him because, ultimately, we needed someone local and we already had a baseline relationship with him.

Sloan called us back same day and said the doctor would not administer Avastin unless we transferred all care to him. They would not treat us under Duke’s direction. Matt’s response to that answer was: Ha that’s funny. These fckin doctors tho. What he meant was, couldn’t Sloan see that we couldn’t walk away from Duke? We were at the beginning stages of a highly experimental clinical trial. We needed a partner, not a new doctor. Why was everyone so unhelpful?

When I started this post yesterday morning, I focused on the phone calls and emails, on cataloging who that day had frustrated and disappointed us, and why. But I missed the quiet story underneath, the one that showed how Matt and I split the phone calls, and vented our frustrations to each other, and admitted that sometimes we’d overreacted and yelled at a receptionist who probably didn’t deserve our wrath.

I would have completely overlooked that story in favor of recording our day if not for what happened after yesterday morning. Because yesterday was an impossible day in the post hope year. It was the kind of day when something as innocent as sifting through the mail triggered a grief reaction. It was a day when the kids needed a little extra patience, but I was on the phone with the hospital disputing a bill, and the leasing company for Matt’s car hadn’t called me back, and the vet emailed that Coco was overdue for a visit, and a dozen other issues all seemed to crop up at the exact same moment. It was an exhausting day with less than my finest parenting on display. Bring on the mom guilt.

Like May 25 last year, yesterday I spent the day making calls and getting nowhere. Once again I spent the day frustrated that the person on the other end of the line didn’t seem inclined to make the process easier. But unlike last year, after the kids were in bed and the calls were made, I threw myself a pity party because I’d lost the person who I could vent to, the person to step in to help parent when I didn’t have that extra bit of patience.

There’s not really a way to turn that positive. (I tried, trust me.) So, what’s the lesson? Solo parenting ain’t easy. (Obviously.) Hospital billing people don’t care that the date on the invoice is connected with all sorts of bad memories. (Not a surprise.) So I’m left with this: sometimes it’s okay to not learn a lesson, to just have a bad day and hope for a better one today.

Funny how hope keeps trying to creep back in.

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May 24, 2017: We

On May 24, 2017, we were back in that holding pattern we’d be in before Matt went to Duke. I mentioned yesterday that Matt had secured a promise from the clinical trial nurse that they would help us to find a local oncologist to administer the third (and we hoped, final) Avastin infusion.

But by the next day, we hadn’t heard a word from anyone at Duke. Not something to be especially alarmed about; it had only been twenty-four hours and we had three weeks until we needed another infusion. But we’d learned that no doctor would administer a drug as serious as Avastin without at least meeting the patient beforehand, which meant actually we needed time to fit in two appointments. One for a meeting, to create a baseline relationship, and a second for the actual infusion. We’d learned the hard way that three weeks crept up quickly.

So, after twenty-four hours we weren’t anxiously awaiting a phone call—Matt spent the day engaged in work drama, ranting and pacing about said work drama when he got home, and making plans to play tennis over the weekend—but we were paying attention to the passing silent hours.

Today is the kind of day where the storyteller in me wants to pick up the pace, throw in an action scene or skip to the plot twist on July 3 or October 8. I can’t do that. The story does move slowly here. May 24 was nothing more than paying attention to the fact that, once again, we’d heard nothing from Duke when we had hoped to hear something.

This is why everyday life doesn’t really make for a great novel. One day isn’t all that different from the next. Stories move forward in micro-bursts and most days don’t look all that different from the day before. Until they do, and then you find yourself looking back nostalgically on all those monotonous days when the story was mostly stagnant.

A few people have asked me if it’s hard to look back on these days when we had every reason to believe everything would be fine. I’ve said before that these days are hard to write because they are not the days that fill my thoughts most nights. Sometimes, it’s hard to think of something to say about a random day in May. But otherwise, it’s not hard to look back on the easy days which are nothing more than vague memories. There’s a quiet joy in re-reading our texts and emails and noting how everything was “we”. We needed another infusion. We had an appointment. We could use .5mg Dex pills so we had flexibility in adhering to the new tapering schedule.

Because at some point, that “we” vanished. It became, “Matt has an appointment,” or “Matt needs bloodwork.”

I remember when I realized I’d shifted away from saying “we have an appointment” and I remember being horrified with my betrayal. We were still fighting together, everyday, so how could I have stopped saying we?

Now, with the benefit of hindsight, I can understand why my language changed without me realizing it. We were still a “we”, but it was harder to convince myself that “we” were fighting for our lives when I got to go home every night and he was trapped by tubes and wires and machines in the hospital. Hard, on the worst days, to convince myself that we were still a “we” at all when sometimes he looked at me like it was all my fault, when it felt like he was already gone and only the GBM was left.

Brain cancer shattered the “we” I used so casually in May with stunning speed. That’s the brutality of brain cancer, the unique horror that comes with this particular disease. The “we-s” are destroyed even before lives are lost.

So, even though revisiting May 24th does not make for a page-turning story pace, there’s something easy about remembering “we,” which was a word that was ripped away weeks and months before February 3.

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Today’s post inspired by this email.

May 23, 2017: Quick Trips To Duke

By 6:39 a.m. on May 23, 2017, Matt was at the gate at the airport, ready to fly to Duke for his second Avastin infusion. By 9:37 he’d landed and by 12:18 he’d been seen by the clinical trial nurse, had secured a promise that Duke would help him find a local oncologist to administer the third Avastin infusion, and was cleared to play tennis. The Avastin infusion wasn’t scheduled until 4:30, but by 1:02 he was in the infusion chair hooked up to the drug that no longer felt so dangerous. By 4:29 he was back in Newark. Less than twelve hours out of state. My guess is most of our friends didn’t even know Matt had gone to Duke and back that day.

That was by design. I’ve said before, these were the most hopeful days, the days we most wanted to separate ourselves from anything associated with cancer in our real lives.

Because a year ago today, Matt and I really tried to distance ourselves from anything cancer related. We played down Matt’s diagnosis and didn’t always mention that he was making a day trip to North Carolina for a controversial black box drug. We didn’t want to be defined by our fight. Now, I am forever defined by what cancer has stolen from my life. There is no distancing, and I wouldn’t want to, anyway.

I often compare then and now in these posts. At times, I’ve been surprised to find that things haven’t changed. Mostly, I end up devastated by the sheer magnitude of how much has changed for the worse.

Yesterday I went to an event for an organization that supports families impacted by cancer. It was my third year going. The first year, I stood outside on the balcony and cried with stress because I knew something was deeply wrong with my husband. The second year, I sat at a table, watched the promotional video, and welled up with tears, surprising myself because what did I have to cry about; Matt was on the road to cancer-free.

This year, I didn’t cry at the event. I didn’t feel the tears sting the back of my eyes during the video and I didn’t choke up during the speeches. I simply listened. Rather than stress or denial, I had an entirely different reaction this year, one that more closely resembled empathy, I think. I understood the hope pouring from the patient on the video who dreamed of one day seeing her grandchildren and I felt the depth of the loss in the words of those who spoke about family members who’d lost the fight against cancer in a way I couldn’t last year or the year before.

In the last weeks, when Matt was gone before he was actually gone, I started writing him letters because I missed talking to him. (Possibly with the hope of showing them to him when he got better.) I continued that project for a bit after. I don’t plan to re-read the letters but I remember wanting to tell him how loss could climb into your soul, change everything about how you see the world. I remember realizing, even back in those early days when nothing made sense, that I had changed, fundamentally.

So, my then versus now analysis. A year ago today, I couldn’t simply listen to the stories. Not in any real way, which isn’t a judgment on who I was last year; it’s simply a reflection of how I needed to cope with my own unraveling life. Now, I cannot hear a story about cancer without feeling connected to the hope and pain and fear and faith associated with the battle, without wishing I could lift some of the burden because I know the weight is so, so heavy to bear alone. Now, instead of just crying for the stories, I know to listen, too.

It might be a change for the better.

May 22, 2017: Cure and Miracle

May 22, 2017 could have been a bad day. Thanks to the email from Hackensack, we could have spent the entire day questioning our decision to stick with Duke and the polio virus and Avastin. We could have spent the day obsessing over the fact that Duke had speculated Matt had one of the more aggressive tumors.

We didn’t. That simply. Matt and I didn’t discuss anything medical over text or email. I made an appointment with an electrician. The only picture in my phone from that day is of the white sneakers G needed for cheerleading. A friend texted me and asked if we were okay about Hackensack’s decision or worried over the concerns they’d emphasized, and I said: nothing has really changed.

Fifty-eight posts into this project, almost two months of reliving our story, and I am still amazed by how wildly,  magnificently hopeful we were every single day despite the warning signs.

Back in March, I referenced the 60 Minutes episode titled, Killing Cancer, which took a look at the polio virus vaccine. I still have the tab open in my browser with the transcript of the episode that aired in 2015. (Maybe time to close it?) Probably somewhere in my mess of saved links I have the 2016 episode, as well. What I did not save were the flood of articles that were published after CBS aired these episodes. Most memorably, an article that broke down the episode and another that called the 60 Minutes story irresponsible. I read them all way back when and then pressed the little red x to close them. That simply.

Cure and miracle. Those are the words I took away from the 60 Minutes special, though the doctors very carefully work to lead the story away from those grand promises. They did the same in real time in the exam room. Whenever I said cure, the doctor would put up a hand and tell me she didn’t say cure. Funny enough, that’s all we heard, anyway.

Because we chose hope, but it wasn’t the only option. In writing for these last two months I’ve often thought about how it would have looked if we’d been less hopeful and more realistic. Did we miss out on something extra because we let ourselves be blinded by the words miracle and cure? If we let ourselves believe there was no next year, what would we have done?

My first thought was we would have traveled. Gone on an epic vacation and seen parts of the world we’d only ever heard of before. But then my second thought was: did we really want that then? We did try to focus more on experiences with the kids. We scheduled a handful of vacations, most of which were canceled because Matt got too sick too fast. And, in theory seeing the world sounds nice, but what Matt and I wanted, most of all, was to wake up and go to work and worry about the electrician and stress over finding the right white sneakers for cheerleading. We wanted to watch Game of Thrones, complain about our untrained dog, and text bad jokes to each other. We wanted only that pre-cancer life we built for ourselves.

I’m sure there’s some balance between being realistic and being hopeful. I know we never found that balance. But I don’t regret not going on the epic vacation or not seeing any option besides hope. I am grateful that pressing the x, choosing to only hear the words miracle and cure, eschewing realism, let us live the life we loved on May 22, 2017, the one we’d built and the one we didn’t want to lose.