Sometimes You Have to Run

In February of 2012, when my husband was diagnosed with a grade III astrocytoma, we had some time. His prognosis was 5 to 7 years. Most people with brain cancer don’t get the kind of time we had and we didn’t take it for granted. There were times to stand and fight, times to be still and make a plan, but this is a story about a time we ran. 

In April of 2018, right around his 36th birthday, Brian’s cancer came back. This time it had advanced to grade IV, glioblastoma. We had treated it with the standard of care, surgery, chemo, and radiation before. So we were out of treatment options outside of more surgery. 

So, in September of 2018, Brian was at the end of his marathon cancer “journey,” I hate when people call it a journey, but that’s what it felt like in that moment. So many things were happening in big and small ways, but everything felt like it was going in slow motion. 

I was in the hospital one Sunday morning keeping vigil over Brian’s ailing grandmother. I took a break in the hall and was on a quest to find some coffee when my phone rang. It was our Hail Mary call. There was a clinical trial at Northwestern in Chicago that Brian qualified for. He didn’t qualify for many because of his recurrence. There hadn’t been a spot in this trial when we went up to try to get in two weeks earlier, but someone had dropped out. There was one spot open and it was ours if we could get there in two days. 

It was a virus vector trial. The kind where they inject a virus into the tumor as a way of hijacking the body’s immune system to attack the virus thereby attacking the tumor. Highly experimental as standard of care for Glioblastoma hasn’t changed in the last 40 plus years. Once again full of the wildest, most unyielding hope, we packed up and went back to Chicago. This was it. This was going to work. It had all fallen into place. All of our prayers and everyone else’s had finally been heard, and they were being answered. 

I drove us on what little sleep I was on, but it didn’t matter. We were electric. Brian’s cousin got us a suite in a fancy highrise hotel connected to the hospital so I could be comfortable and close while he was in surgery. It was the nicest room I had ever been in. We dropped our bags at the door and I went around the corner into the giant bedroom. I pulled the curtains open and jumped on the bed like a kid on vacation. We ate a celebratory dinner at a Brazilian steakhouse and watched The X-Files in bed until we fell asleep. Brian had a mapping MRI the next morning and surgery would be the following day.  

I slept in fits because of nerves, but Brian was calm. He somehow always put me first, even in the worst of times when he must have been so afraid. The next morning we checked into the hospital early and Brian kissed me and went back for the MRI. I sat in the mostly empty waiting room, bouncing my leg, texting everyone that he made it back and this was the first step. 

He came out faster than I thought he should. We shared a look of concern as we were ushered back to a small room to wait for the doctor right away. I honestly cannot remember exactly what the doctor said, a lot of these memories are swiss cheese in my brain, full of holes. But the MRI showed that in the two weeks since we had last been up to Chicago, Brian’s tumor had grown so rapidly that he was no longer a candidate for the trial. 

Somehow, we made it back to the hotel. I don’t remember walking there. I just know that I crumbled into the white clouds of bedding that I had been jumping on just the day before. I had fallen from the highest of highs to the depths of despair in a matter of moments. 

I have a deep and abiding love for all things strange and unusual. The X-Files was groundbreaking TV during my formative years, and my dad raised me on Ray Bradbury and The Twilight Zone. Brian knew of this love and indulged me in little ways throughout the entire course of our relationship.

While I was sobbing in bed, Brian walked around the corner. He looked at me in his steady, calm way and said, “Well I guess there is only one thing to do now…”  I looked up at him quizzically, to hear him continue, “the Mothman Festival is this weekend in West Virginia. Your mom already has the kids. Let’s go.”

The bucket where Brian kept his list wasn’t even in the same closet as mine. He wanted to take me to do one last weird thing together. Something fun I could remember.

So, we ran. 

We tried our best to forget, and we did a great job. He drove us to Point Pleasant, West Virginia and it was some of the most fun we ever had. We listened to some keynote speakers, went on the TNT area bus tour, ate all the greasy festival food and listened to live music. My formerly fiscally responsible husband even let me splurge on mothman adorned T-shirts, and the big green plastic souvenir cup. 

Usually, you don’t get to know when you do something for the last time. It just happens and then moments or years later, you realize that was it. This trip was one gift cancer gave us. I knew it was the last time we would go somewhere together. The last time we would sit in a theater, the last time we would walk next to a river holding hands.

It all caught up to me the last night in the hotel. For the first time that trip I could feel the future reaching back to get us, to take him away from me. I knew with every cell in my body that it was the last time I would be with my husband. I tried to make a memory of every part of it. Every smell and touch and taste. And all at once, I was overcome. I told him I didn’t want him to die. Then he finally broke open too, he said he didn’t want to either. And we held each other that way for a long time. 

The next morning he drove us home from a trip for the last time. We got back and his decline accelerated fairly rapidly from there. Brian passed away a mere seven weeks later. But that trip, as silly as it was, will always be one of my favorite things he ever did for me.

Sometimes you have to run.