Saturday, January 13, 2018

"Darker Than a Georgia Night With a Heavy Heart"

The Hassells have spent the last week getting back to it. Back to school, back to work, back to medical appointments, back to gymnastics and back to attempting to go to bed at a decent hour. The first week back after a break is always an adjustment for a teacher's family.

Jordan started chemo again yesterday after having some positive results with her recent blood work. Her spirit seems to be in a good place. She is laughing and arguing with me as usual, giving the kids a hard time and shopping at Target. Pretty pedestrian and welcomed here.

Jordan had a routine appointment this week at OHSU. It was super early in the morning so Jordan and her mom stayed in Portland the night before. That left me with the kids for the afternoon/evening. Someone made a beautiful meal for us that I didn't think my children would touch with a ten-foot pole (just to prove me wrong they ate it and loved it the next night). So being the good dad that I am I improvised. The kids and I picked up a pizza, polished off our afternoon routines and had a movie night. Pizza, an Adam Sandler movie (the kids picked) and they still went to bed on time. I know it is only January but I'm expecting my dad of the year award to arrive in the mail any day now.

I was looking forward to a long evening in my green chair with a recently purchased Wilco album and Anne Lamott book. I settled in, spun the record and cracked the book. I read all of one paragraph and barely got through the first verse of Misunderstood before I completely zoned. I came back to reality when the needle finished off the record. I drug myself out of the chair into a silent and empty bedroom. I slid into a cold bed and covered myself with a mountain of pillows and blankets. I basically just gave up on the day. A day that had been great up until that moment. A fun day at work followed by a wonderful evening with my kiddos. I let that final moment rob me.

That happens (a more appropriate phrase might be "something else happens" but my grandmother reads this blog). I have those moments. Or those moments have me. I'm not sure. A day is going great and then BAM. Floored. Sometimes it is an innocent interaction I notice between two people or it is something my kids say in passing. Sometimes it is just my soul catching up with my body that always seems to be busy and in motion.

Waking up the next morning I was kind of still in that moment. I got out of bed as I've done a thousand times and put on my smelly running shoes and snuck out into the dark. Don't tell anyone the kids were still asleep at the house by themselves (dad of the year award revoked?). The run was half habit and half an attempt to put my worn out body back in motion.

Oregon winter mornings can be dark. Especially where we live. There are no street lights here outside of "town" and I don't carry a light or wear any of the appropriate clothing (sorry mom). So it was dark and vast. As I ran along a long straight road all I could hear was my breathing and my shoes hitting the wet gravel covered pavement. It smelled wet and clean and like nothing at all. It is a void that I have become familiar and comfortable in. My description is so poor and doesn't do it justice. If you haven't snuck out into a cold dark morning before the world wakes up there is nothing like it.

As I hit the halfway point in my run I did something really odd for a runner. I stopped. I stood still. I stared up at the black sky and I was just there. For a few moments that was it. Then I got cold and ran home.

As I went through with the rest of my day I realized that what brought on my moment(s) was an absence. Jordan wasn't there. For the first time in a long time, there was a night when we were apart. It wasn't familiar. It was painful. It was real. It was and is too much for me to face. A new cold dark void that I hope like hell I don't ever have to try and be comfortable with.


Friday, January 5, 2018

"So This is the New Year. And I Don't Feel Any Different."

The Hassells survived the holidays! A whirlwind of family, playing cards, friends, crashing in hotels, staying up late and trips to the airport. We had a blast and it only took me about eighteen hours of cleaning to get our house back to pre-holiday normalcy. We are spending the last few days of the break basking in the glory of Parkdale. Walking to the post office, staying in pajamas all day and being lazy are the only things on the schedule.

Jordan is getting ready to crank out her next round of Chemo. We have had a few weird transactions with blood draws and transfusions recently. All in the name of learning more about the thyroid (totally underrated), white blood cells, red blood cells and several big words I can't remember right now. I wish the nurses from OHSU could see the confused look on my face when I am on the phone and I say things like "Oh great! Glad that such and such is up from 27 and almost at a 100". We are also in the process of navigating home health care. Juggling a nurse, a bath aid, physical therapist, occupational therapist, speech therapist and trying to find a person to help care for Jordan during the day is a blast. At least they call you six to seven hours before they want to come into your home.

I've been mulling over a blog post for a week or so. Honestly trying to avoid talking about the new year and resolutions. I've never been the type of person to waste the first six to seven days of January to these militaristic pledges. If lots of people are doing something I tend to not do that. Mainly because I'm still a little bit of an angsty teenager. Plus I've already broken my new year's resolution to stop being so handsome.

As I've spent the last few days reflecting on 2017, I also wanted to avoid the bashing. You know the why am I still fat, my job sucks, Greg Allman died, the Star Wars movie wasn't that great and all the normal crap that people blame on the actual year as it passes. Instead, I've been just trying to wrap my head around 2017. When I get deep in thought about it I feel like someone in an action movie that was really close to an explosion. My ears are ringing, I'm disoriented, my clothes are dirty (more than usual) and the things close to me have been blown up.

I asked Jordan today what was the best year of her life and she instantly responded "2016". Jordan just kind of looked at me because she knew what I was going to ask next. "2017" was her easy response for worst year ever. She then said, "sucks that they were right next to each other".

2016 was a wildly awesome year for the Hassells. 2017 was a wildly horrible year for the Hassells. Such stark contrast in a short amount of time. I jokingly asked Jordan what her resolution was for 2018 and she said, "to not die from brain cancer". So don't feel too bad when you eat that entire carton of ice cream at 11:00 PM in a few weeks.

So how should Jordan and I approach 2018 when it looks like it might be another hearty spoonful of 2017 coming our way? My plan is to continue clinging to the good.

I took my kids to get their haircut today. I enjoyed sitting on the other side of the wall and listening to both my kids chat up the complete strangers cutting their hair. Yesterday Benton was eating lunch at the counter with his head in his hands (he stays up late reading) and for a split second, I saw him as a grumpy teenager. It was great! Today Parker took a present that someone left for Benton on his bed and wrote a note that said "Frum Parke-r (r was on another line all by itself)". I mean I would totally do that. I ran this morning and there is nothing like the cold crisp winter air filling your lungs and stinging your face as you get moving. It is a simple reminder that I'm alive. I've been cooking breakfast and sharing meals with my family the last few days. An act that I've always cherished. I've been holding Jordan's hand, kissing her on the forehead and just staring at the woman I fell for long ago. I've also enjoyed saying absurd things and making Jordan laugh. Yesterday I asked Jordan how things would be different if I had never been funny and she said, "well I wouldn't have married you". These are just the things from the last twenty-four hours or so that I have been clinging to.

So my deep hope for 2018 is that I continue to see, recognize and cling dearly to the things that are simple, good and true in my life.


Sunday, December 24, 2017

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.