Thursday, March 22, 2018

"Who Lives, Who Dies, Who Tells Your Story?"

As if our appointment with OHSU yesterday wasn’t enough we had one thing on the calendar that absolutely hell or high water had to happen. It had been on the calendar in bold font, circled and starred for almost eighteen months. Hamilton in Portland! Jordan was determined to go and would have gotten out of her wheelchair and strangled me if I hadn’t taken her. So after our news from the doctor, Jordan squeezed in a nap, I made some phone calls and then we got all dolled up. Our friends drove us and helped me get Jordan to the door. I wasn’t sure how we were going to make our seats work because we didn’t have accessible seating. I called several months back when Jordan started using a wheelchair but the show was already completely sold out. So I did some smooth talking, we did some wiggling and I managed to get us into some regular seats. If you have seen how difficult it is for Jordan to move around right now you would really appreciate the beauty in that. I’m so glad we were able to make the show and we had a blast. We even scored the kids and Jordan some sweet Hamilton t-shirts (single-handedly paying Lin-Manuel Miranda's mortgage this month).

A dress and the corduroy date night coat. Looking dapper!
After a late night, the kids and I were on a plane at 6:00 this morning and headed to Orlando, FL for my sister’s wedding. It was with a heavy heart that we decided a week or so ago that Jordan would stay behind with her parents. We were looking forward to the family trip and had lots of things planned. But with a last minute audible (I made lots more phone calls as per my usual routine) we made the trip happen. The kids are excited to see a pool and a beach that you don’t have to wear your winter coat at. Oh and my family. Yeah, those guys too.

What a typical afternoon of phone calls looks like at the Hassell house.
So I get to write my first blog post at 30,000 feet all while Benton farts every thirty seconds (gotta have a talk with him before the return flight) and Parker eats $48 worth of snacks from Trader Joe’s before we even leave the runway (second breakfast is the best breakfast). I’m lucky to have two wonderful and independent kids that know how to travel. We got to breeze through the PDX airport this morning. I never had to ask them to stop touching something or to keep up. Parker and I got to race Benton on the moving sidewalks too. It is like traveling with two really fun friends. Also, they are cute enough to get extra attention from the flight attendants (extra Biscoff cookies for everyone!).

Ready for take off!
The flight is a perfect chance for me to reflect and process a little. Mainly because I’m strapped to a chair and can’t find anything else to keep my mind distracted. Just my thoughts and a little Wilco coming through the earbuds (and Benton’s odor).

I recently met with Benton and Parker’s therapist to give her an update and to talk with her about what I can be doing to help the kids navigate everything that is going on. She said something that immediately stuck: “healing happens in the silence" and “growth happens in the awkward spaces”. Boy, are there some awkward spaces right now. Awkward is currently occupying all the space. Awkward is spread out, shoes off, taking up both the arm rests and asking me to bring it a beer. Awkward isn’t going away anytime soon and should probably be paying me rent. When awkward shuts up for a second it is all silence. There isn’t a ton of silence right now (Awkward is an attention whore). But silence is on the way. Silence is waiting patiently for its turn.

I saw yesterday that in the awkward and in the silence there were people. Actual family and then friends that have become family. Just being present. Standing in that gap between us and what was going down. People struggled to do it over the phone and people struggled to find a way to try and let us know that they were wanting to do it from afar. But what I appreciated was that we had people. People in our corner. Good people. Some of the strongest, brightest and kindest people I’ve ever met. Standing there taking it with us. The full force of everything that was revealed to us. No words, mostly tears and the power of being fully present.

I think there is beauty in that. In the willingness to say to someone that “your path is mine”. No matter how rocky, dangerous or where it leads. It is what Jordan and I signed up for with each other almost thirteen years ago. As a bonus, we have had several crazy people along the way that have been willing to jump on this bandwagon. It is so good to have you with us right now in that silent and awkward gap.


First unplanned pit stop of the trip. Waffle House!!!

Wednesday, March 21, 2018

Meeting With OHSU

We were back at OHSU today. Another MRI, another blood draw and another appointment with the neuro-oncologist. I was able to navigate to and around OHSU today without any map or GPS assistance (we forgot the phone) which was a minor miracle. The neuro-oncologist was very brief today. He held both of Jordan's hands looked us both in the eye and shared that Jordan's tumor is growing despite the intense treatment. The doctor then shared that it is time to stop treatment. Stop treatment. Two words that didn't even begin to shock Jordan or myself in the moment. The doctor also shared that based on Jordan's diagnosis that she has between two and three months left to live. I asked a few awkward questions but mostly we just sat in silence. The doctors sat in silence. After some more awkward silence, I asked if we could have the room to ourselves for a bit before we left. The team said their goodbyes and moved on to their next appointment. I think they were waiting for some kind of crazy reaction from us. It never came. Like true professionals, we waited until they left before breaking down.

It felt weird to hear something said aloud that Jordan and I have been bracing for. Something that has lingered around in my head at night when I couldn't sleep or crept out from the shadows of the orchards when I am out running. It was hard to speak the phrase "stop treatment" and the word "hospice" out loud. But today I've spoken it several times. Sometimes while avoiding eye contact with friends that were present but mostly just awkwardly over the phone. My presentation was lacking and the responses were varied. Some shock, some tears, some deflection and lots of questions. Mostly you could hear that people didn't know what to say. It's ok. No one knows what to say lately. Including us.


Saturday, March 10, 2018

"Sometimes it feels like a heart is no place to be singin' from at all"

It has been two weeks since we received news that Jordan's tumor has grown. During this time Jordan has continued to lose strength and feeling in the left side of her body. She struggles mightily to stand even with the full assistance of another person. It is a huge effort for her to go from her wheelchair to the bathroom or to the bedroom. These short transfers come with a racing heart, shortness of breath and a desperation for rest. It is hard for her to hold her head up for longer than a few seconds before it slumps down at a depressing angle. Sometimes you can hear the weakness in her voice as she whispers a thin thank you for helping her. Jordan is in rough shape. I don't know any other way to put it. I've avoided saying it for two weeks. There is an overwhelming sense that each passing day might be the best physical shape that Jordan gets to experience moving forward. It is a gut-wrenching process to watch each day.

Jordan and I had our worst date ever a couple of months ago. Which is saying something considering that our first date over fifteen years ago was sitting in a K-Mart food court that had closed for the day. This last December we snuck away from her visiting family and the kids for a night out at our favorite brewery. During the van ride, I asked Jordan if there was anything she wanted to talk about. Without hesitation, she said "my funeral". As we awkwardly made our way to the brewery we chatted about just that. What it should look like, who should speak, what the music should sound like. As we sat at dinner I did my best to just stare out the window at the darkened Columbia Gorge. I had trouble eating and drinking as I was using all focus to hold back tears.

Since that night we have started talking more and more about a funeral.

Jordan wants a friend from Portland to lead a service for her in our local community. It is a man that I love and respect with everything that I am. Someone that I have looked up to since the day I met him. He and his family have accepted Jordan and I since day one of our relationship with each other. He has encouraged us, pushed us, loved us and challenged us to have a life full of joy and full satisfaction. He has been someone that has been helping us navigate this whole mess. We went skiing recently. While riding the lifts we talked about a funeral. The strangers stuck sharing the lift with us quickly stared at the horizon or pretended to mess with their gear and not look in our direction. What a great way to cut through the awkward "where ya from?" small talk you have to have with everyone on the lift.

I've started listening to music in a different way. Songs that have meant so much to Jordan and I in the past take on new meaning. How do you find a song that honors and captures the essence of a person and conveys that to everyone else? I mean I'm leaning hard towards a Neil Young tune, just to be honest.

This week I went to a funeral home. I had a meeting with a very nice lady. Too nice really. I sat in this large room filled with funeral upgrades. For an extra grand, you can get an American flag carved into the corner of your casket. For just an extra hundred bucks you can get gold leaf trim on your funeral programs. She talked and I stared blankly just over her head at some book on the wall about how to deal with grief (complete with some bad pastel painted flowers on it). I had a hard time deciding if I should be angry, vomit or laugh at how ridiculous it all was. We filled out legally binding paperwork and I pre-paid for my wife to be cremated. Locking in the best rate to protect against rising inflation! They actually say shit like that. I left dazed, angry, broken and with a nice little packet of information (full color and super thick card stock) with a receipt stapled to it. I had a few extra beers that night with all the money I saved.

I've recently enrolled the help of a local friend. A new friend. A friend that had no idea what she was walking into nine months ago. A kind, loving, thoughtful weirdo with a knack for small and creative gestures. She even happens to have a mom that makes pottery and has agreed to make a tasteful urn that doesn't have "made in China" stamped into the bottom of it.

When we first found out about Jordan's diagnosis she had to force me into the hard conversations. I was in denial and I was angry (and I still am). Yet somehow I've become comfortable with wading into the uncomfortable. Jordan has said so many times that we are lucky to have the time to have these conversations about death, her final wishes, our fears and the future. So many sleep through the alarm of life and just don't wake up one day.

This funeral is a nail that I can pound on for a while. A problem to be fixed. Something that is broken and needs my attention. But in reality, it is a distraction. A distraction from watching my wife slowly lose a battle. In reality, a battle that we knew she would eventually lose when she was unwillingly recruited.

And right now she is losing hard. The most excruciating part is that neither of us knows if there is a tomorrow, next week, next month or next year in store for us. Even in that, the whole of the last nine months has been a perfect reflection of who Jordan is and always will be to me. A "rich, real and authentic" (borrowing a line from a recent letter to Jordan from a friend) human. Someone that despite the hell she is being drug through on a daily basis has found a way to remain true.