See You in Two Months...

Sorry for the delay in updating everyone. Jordan's family is in town, it is Christmas, I'm lazy and it is snowing here. Pick one of those excuses please.

We rolled back to OHSU on Wednesday for the first time in two months. The place is wildly confusing. Elevators that only go to certain floors and three different "B" elevators are just some of the highlights. "Can't get there from here" is basically the unspoken mantra of the person that designed the hospital. This is probably some great analogy for the whole journey we are on but I'm honestly too drained to try and put that together right now.

As Jordan was getting her MRI on Wednesday I wandered down to the cafeteria. I sat at the same table I sat at in July as Jordan was having brain surgery. In July I sat at the table with friends. We all sat there nervously with no clue as to what to say. Yesterday I sat there by myself. I wasn't by myself because no one offered to be there. Several people had offered. Jordan and I told them all we were ok to be there by ourselves. I realized in that moment why I chose to sit at the same table and why I was oddly ok with being by myself. It was because all this has become familiar. That was super strange and confusing to me. After a few minutes of staring at my burrito, I realized I was angry (they overcooked the eggs). Angry because OHSU shouldn't be familiar. Angry because I didn't and don't have any control. Angry because it won't be my last trip to that table in that cafeteria. Too angry to think or process anything in a rational way. Everyone that works in the OHSU cafeteria knows not to make eye contact with someone blankly staring at their breakfast burrito. They've seen that look before...

After all of Jordan's scans, bloodwork and a quick trip to Portland to get harassed by a crazy person while trying to enjoy lunch we were back at OHSU for the results.

Jordan's tumor hasn't grown or shrank in size. The swelling in her brain has gone down significantly as a result of the risky treatment that she was taking. The MRI revealed some tissue damage around the tumor from the radiation treatments. This is normal and the tissue has the possibility of recovering. Her blood work revealed yesterday that her platelets (keeps you from bleeding to death) are super low (think less than 20% of normal levels). This is something that typically happens when you are taking chemo. Jordan will hold off on her next round of chemo until the platelets return to normal. This could take a few weeks and several transfusions. A friend told me she hoped the platelet donor was a Brit so that Jordan picks up a cool new accent. Not sure that is how that works but fingers crossed. So while Jordan's symptoms haven't improved (they have gotten slightly worse in the last few weeks) it looks like things are going slightly better in her brain. The doctor shared that her weakness, slurred speech and lack of coordination could be a combined result from the treatment, the steroids she has been taking (currently working on taking her off!) and just general apathy.

As we were receiving all of this information on Wednesday and asking awkward clarification questions I finally asked: "Is this good news?". The doctor shared that this is about the best possible news that we could have realistically gotten. He then shared that we will continue treatment as normal and check back in at the end of February.

Jordan has bought us all two more months. We will take it.

Brack

"Sick in the Head"

My memories are a little fuzzy. I don't do so well with remembering the name of my fifth-grade teacher or what I got for my birthday two years ago. I recently told someone that a mutual friend used to sing Opera and that was completely wrong. Details aren't my strong suit. I've got some super strong memories though that are tied to these anchors. The anchors being songs, melodies, lyrics, a beat or the distinct sound of a weathered folk singer. Music has always transported me to another place and some of my most distinct memories are entangled in music.

This is weird because I have the musical talent of a rock. I clap on the wrong beat (drives Jordan mad), I can't match pitch and I absolutely stink at drums, piano and guitar (I know because I've tried). Music has always been a companion though on all my strange journeys in life.

My first cassette tape I remember owning was Tom Petty's (RIP) Full Moon Fever ("Zombie Zoo" is a total sleeper track). I absolutely wore it out. My first CD purchases were Stone Temple Pilot's (RIP Scott Weiland) Plush and Blind Melon's (RIP Shannon Hoon) self-titled debut. I bought them at the mall! Do those even exist anymore? My first vinyl album was Pearl Jam's (Eddie Vedder still going strong baby) Vitalogy and was a gift from my uncle. I could go on for days how tracks from those albums instantly transport me back to a place long gone. Sweet sweet teenage angst and the awkwardness of youth are forever wrapped in the songs from those albums.

It isn't just music to me. There have always been raw and real emotions tied to it. It means something. I think it is a big reason why I like talking/sharing music so much. I love seeing someones face light up when they enjoy a song that is already tucked away in the back of my head. I love it when I'm sharing an experience with someone and a great song comes on. I know that moment will forever be saved for me and cued up the next time I hear that song. A new anchor. Some of my favorite anchors are ones that tie me to others that I care about.

I've had two big, rusty, salty and barnacle covered anchors dropped into my memory in the last year or so that I will share.

I first heard the song "Sleep on the Floor" by the Lumineers in April of 2016. I was in my kitchen making dinner after a long day at work. I was completely disillusioned with myself at the time. I had lost my zeal for teaching. Something that I was certain I wanted to do and knew that I loved deep down. I hated getting out of bed in the morning. My family suffered from my misery. I had already resigned from my position in Georgia with no job lined up and this hair-brained idea that I was going to move my family to Oregon. I had no real plans but knew something had to change for my own sanity and for my family. I heard "Sleep on the Floor", shared it with Jordan and it immediately became our theme song. We sang it a hundred times over the next couple of months. The very first time we ever drove into the Gorge we blasted that song and I instantly knew we were home. Something that has been confirmed over and over again.

The song came on Pandora recently. I was in the shower and getting ready for work. I wept uncontrollably. After the song finished I turned off the music and just sat in the hot shower. I couldn't even stand as I thought about what that song has meant to Jordan and I and all that has happened since we landed in our new home. That was a fun day at work!

Pearl Jam's "Better Man" has been swimming around in my head since I was a teenager. It is on the B side of that vinyl album my uncle bought me. I remember singing along with two college buddies after we snuck down to the nice seats at their concert in Atlanta. When you sing along with Pearl Jam there is usually some mumbling because Eddie Vedder doesn't even always know what he is saying. The song has popped up in all sorts of places in my life and is tied to all sorts of anchors.

Those Pearl Jam anchors were smashed by another really large bully anchor in June. Jordan, I and the kids were camping in the backyard of our new home in Parkdale. We had abandoned our real camping trip that we were on because of mosquitos and were making it up to the kids in the backyard. We also didn't own any furniture at the time so camping in the backyard seemed pretty logical. It was a beautiful crisp and clear night. We had a fire going and were roasting marshmallows for the kiddos. As the evening wound down Jordan had decided that she wanted to tell the kids about her tumor. We had just found out a few days before and had been debating on how to tell them. Jordan had to be the one because I was a complete coward and wouldn't have been able to. I sat there under this perfect sky as Jordan and my kids began to process what would be our new reality. I floated in and out of this conversation because it felt like a dream. I viciously fought back tears (which seems completely ridiculous now) and all I could manage was to let a kid sit in my lap and bitterly stare at the sky. As we sat there "Better Man" played faintly in the background.

If I'm being honest I forgot about this moment. It had been pushed out of my head by all the other craziness of the last six months. That is until I heard "Better Man" last week in my car. I was instantly in the backyard again. I could smell the campfire and taste my salty tears. I had to pull over. I just sat there like an idiot on the side of the road. The song finished, I deleted it off of my iPod and continued my drive home from work with misty eyes and complete silence from the car stereo.

On December 20th, Jordan and I return to OHSU for her next MRI scan and results. We will spend the day sitting, waiting, hoping and wishing. We will have an awkward lunch in between appointments. The day will be clunky. We will make small talk and I'll make stupid jokes in an attempt to make myself feel better. Neither one of us will know what to truly say or think. There will be lots of heavy sighs. I'll bring a book and not open it. We will have to ask the Dr. to repeat himself at least once. We will get news. We will struggle in our heads to process it as good, bad or just news.

There is one other thing I know for certain about December 20th though. I'm going to turn the music off in the car before we get to OHSU. I don't need another anchor right now.

What are some of your anchors?

Christmas Season is rolling along here. Parker's teacher hosted a Carols and Cocoa night at her house. We had a blast!

The students at Parkdale are always so kind to Jordan when she visits in the afternoon to pick up the kiddos.

Decorating the tree for the kid's room after a great dinner with a friend.

We had some awesome Parkdale Elves (co-workers from the school one of which is of elf stature) come and decorate the outside and inside of the house. Benton, Parker and Jordan absolutely loved it. It was fun to follow the kids around the house as they found little surprises left behind by the elves.

Benton and Parker reading their notes that the Elves of Parkdale left.

Let That Be Enough

I recently read an article about a person's struggle with their cancer diagnosis and treatment decisions. What stuck with me was that with cancer in their lives it felt as if they "were just giving up one damn thing after another". The author explained that treatment comes at a cost and deciding against treatment comes at a cost too. Reading it almost made me feel like there are no right decisions.

I've learned that there is a delicate balance the doctors are taking in treating Jordan's tumor. By delicate balance I mean let's see how much poison they can pump into her body without killing her. They are constantly checking her blood looking for some sign that the chaos inside her body is too much for her to handle. The reports keep coming back good so that means more infusions and more pills. It is crazy what you can talk a desperate couple into thinking is ok when it comes to modern medicine! All for the possibility of some progress.

Last week Jordan completed her last infusion (she can't take more because it causes internal bleeding) that was supposed to alleviate some of her symptoms. Jordan still takes a steroid she has had every day since her surgery in July. It is dangerous to just stop taking it. She is also continuing a clinical trial that she receives by infusion every ten to twelve days which is completely paid for by the company that manufactures the drug (I assure you their hearts are in the right place). What they didn't mention was that getting that drug into Jordan's body cost $185 each time (what was I saying about their cold black hearts?). Yesterday she finished her second real round of chemo. A five-day cycle of just getting her butt handed to her by these four little pills. A pill that robs her of all strength. This week she has struggled to make the three steps from the wheelchair to the bed without her knees buckling. A pill that robs her of all energy. A pill that also robs her of the ability to properly rest. A pill that causes pain in her arms and legs.  A pill that makes it impossible for her to sit up without support. A pill that takes her already battered speech and makes it faint and unrecognizable.

I saw a video this week of Jordan and Benton from five years ago. Jordan was manning the camera and having a conversation with a chubby Benton. I heard a voice that I haven't heard in so long (and it wasn't Benton's voice because the kid never stops talking). It was the voice of a caring and loving mother. One that had little inflections of pride and joy as she interacted with her son. In full honesty, I questioned who it was. Then I was immediately hit with a flood of emotions as I heard the voice that I fell in love with. Playful laughter and this soft soothing tone. Then I turned it off because I couldn't watch it again and possibly hold it together.

Giving up one DAMN thing after another. What's next?

Jordan and I have been crying lots lately at night. One of the times was because we realized we didn't have any more episodes of Stranger Things to watch. The rest of the times were because we just didn't know what else to do. There aren't many words right now that capture what we feel.

As we were crying it out the other night I managed an "I love you" followed by "I don't know what else to say". Jordan responded, "That's enough". Since she kept holding my hand and didn't make me take my crying to the couch I think she meant that was all she needed to hear in that moment. As I thought about that interaction a few days later a chorus from a song I haven't heard in fifteen years popped into my head:

Let me know that you hear me

Let me know your touch

Let me know that you love me

Let that be enough

Hunting for a Christmas tree with Nana and Parker's teacher.

Score!

Decorating cookies at the local town hall.

Benton was thrilled to be wearing a shirt with buttons.

Parker asked Santa for a puzzle and Benton asked for a bb gun.

Decorating the tree!

Locally sourced, organic, vegan, cage-free and gluten-free!