Good and bad

Thanks Grace for your update. There have been some good things and some bad things lately. I'll start with some good things. My sister Rachel and my dad Chuck arrived on Tuesday from Rochester NY and Portland ME, respectively. While she was here, my sister heard that she got a big grant that will support her taking a sabbatical during the next academic year (she is a professor too) - way to go, sis! We saw a good documentary called "Wretches & Jabberers" at the new Pickford Film Center (a big upgrade over the old space). The documentary was about two middle-aged men with autism who communicate mostly through computers and speakers. They travel around the world educating people about autism and making connections with other individuals with autism. The film was touching and I would recommend seeing it if you get a chance (http://www.wretchesandjabberers.org/). I made a yummy dish for dinner one night: chicken with mangoes and cashews, cooked with rum. Saturday morning Grace took Miles to stay with her parents in Seattle while she is at a conference in Portland OR (they return Tuesday). We went to a cool educational supply and toy store (http://www.launchingsuccess.com/) and I got Miles a big recycling truck toy and Seth picked out something for himself and a little something for Miles. We saw the best of Seattle's children's animated film festival, again at the Pickford - some of the shorts were just OK but some were delightful. It was so nice for me to have my nuclear family around me during this difficult time. It felt surprisingly natural.

OK, on to some bad things. My sister left early today and I am sad about that. I had radiation treatment on Thursday to my left shoulder and right hip. I'm hoping that will decrease the bone pain but it hasn't yet. Right now I am achieving neither of my two goals (acceptable levels of pain relief and mental clarity) and I'm worried that these goals are slipping further away over time, as the cancer continues to grow and spread and impinge on nerves. The pain is difficult to describe - I think I have felt more pain in each of the past few days than I would in a normal year, although I have no way of measuring that. Pretty much every movement hurts, especially of my arms or legs. However, if I sit or lay still, I get stiff and sore and it hurts more. Catch-22.

My mental state is also deteriorating. I tried to work today - reading and grading papers. It was a disaster. I kept nodding off and having strange (but not unpleasant) daydreams and visions. I'm doing this (nodding off) now while I'm trying to type, which makes the typing go very slowly. In fact, I noticed that it is now after midnight so I am going to go to bed.

Peace and love,

Ethan

End-of-the-week Update

Guest Blogger Grace here...

Ethan received radiation yesterday (Thursday @ noon) in the hopes of addressing the pain where it is the worst: left shoulder and right hip.  He's been resting much of today...

It pains all of us on Team Remmel to see what he's going through and wish we could do more.  Our pain is nothing to what Ethan is going through, so continue to send positive vibes, thoughts, energy, and prayers our way.  He hasn't been responding to e-mail, so if there's anything pressing, you can always contact me: gaw5pa@yahoo.com

~Grace

Last Stand?

I feel like a game beast that has been run to ground. The dogs of cancer are circling, slavering but still wary. My medium- and long-term plans seem far away now. A veil of blood obscures all but the short term. I feel like I am in immediate survival mode.

Ethan

Less Pain, No Brain

With regard to pain control, we've achieved my first goal but not my second yet. I'm feeling much less bone pain. I still have some lingering but bearable pain in the usual locations - thighs and left shoulder. Thank goodness it's my left shoulder and not my right one, as I am right-handed. I sometimes have to use my right arm to move my left arm - kind of like Doctor Strangelove.

Mentally, however, I am M.I.A. I am basically sedated and semi-comatose. So now we need to see if we can achieve the second goal (mental clarity) while maintaining the first one (pain relief). I don't know whether we can achieve both goals simultaneously; we'll see.

I'm mainly posting this message so that (a) people won't worry that I am still in severe pain and (b) to let people know that I am not responding to most messages lately.

Sports notes: Bruins advance to conference finals! The Red Sox...hmm...have the fourth-highest average home attendance in the American League. We're having some folks over this evening to watch the Celtics. If they can beat the Heat, it's still a series. If not, they're basically done. Speaking of which, Hope #2 for the NBA Playoffs (Lakers do not win championship) is looking good, with the Lakers down 0-3 to Dallas. Hope #1 (Celtics win championship) is looking shaky, so schadenfreude may have to suffice. Unless it can be replaced by Shaqenfreude!

Ethan

Pain

My bone pain is out of control. Our goals are (1) for my pain level to be low enough to be bearable (e.g., I can sleep, I can walk, I can focus on other things) and (2) for my mental acuity to be high enough to teach, to drive, and to carry on a conversation. Right now we are not achieving either of those goals. The pain is constant and excruciating even though I am taking four powerful painkillers: 100 microgram Fetanyl patch changed every three days, 7.5 mg methadone taken twice a day, 7.5 mg meloxicam twice a day, and oxycodone for breakthrough pain as needed (which lately has been a lot). As far as mental acuity, I am in a slackjawed stupor around half of the time. I wake up not knowing where I am, for how long I've been there, or why. It's kind of like one of my favorite movies, Memento, but not nearly as cool.

Some notes on sports. In the NBA Western Conference, the conference finals matchup that many people, including me, were looking forward to seeing (Lakers vs. Thunder) now seems less likely than a matchup that nobody would have predicted, including me (Dallas vs. Grizzlies).

In the NHL Playoffs, the Bruins, after dispatching some plucky team from the provinces in the first round, have taken a 3-0 lead over the Flyers. Congrats to the Canucks who also advanced to the second round.

Ethan

Sol Duc Hot Springs

Friday morning Lynn and I had our conference with Seth's teacher Jessica. The kids do extensive self-evaluations and include some of their favorite pieces of schoolwork. It was interesting to read Seth's self-evaluation, which seemed honest and accurate. One nice thing that Jessica shared with us was that many other kids mentioned that they had a new friend named Seth who they liked. So apparently Seth has high "sociometric popularity." Last week in my class we talked about the distinction between sociometric popularity (being well-liked by peers) and perceived popularity (being perceived by peers as having high social status and influence) and the fact that sociometric popularity is associated with better outcomes than perceived popularity, which is often associated with aggression (physical, verbal, or relational). Anyway, I am happy that Seth is doing well socially at school, especially considering he arrived in the middle of the school year into a classroom where some of the kids have been together for three years. Jessica predicted that Seth would do well in the upper elementary classroom (grades 4-6) in the fall, which has a male lead teacher named Jon who I have talked to and been very positively impressed with.

After the conference, Grace, Seth, Miles, my mom, and I packed into my car and drove (thanks Grace for doing the driving all weekend!) over Deception Pass to Keystone on Whidbey Island, where we caught the ferry to Port Townsend on the Olympic Peninsula. We could see the snow-capped mountains of the Olympics ahead and the North Cascades behind, as well as the mountains of Vancouver Island to the north across the Strait of Juan de Fuca. We drove from Port Townsend past the small cities of Sequim and Port Angeles and beautiful Crescent Lake before turning into the Park and reaching Sol Duc Hot Springs. We rented two basic but adequate cabins, one with a kitchen. We wasted no time in trying out the hot pools. There are four: a medium-size hot pool, a smaller very hot pool, a shallow and slightly cooler kiddie pool, and a large and much cooler pool, which I did not try. The pools have a sulfur smell which I do not like but got used to. Mom cooked us dinner (thanks Mom!). We retired early, tired from traveling and relaxed from soaking. Mom and Seth stayed in one cabin and Grace, Miles, and I stayed in the other. Miles claimed one of the queen beds and I claimed the other. We each wanted Grace to sleep in our bed. If you have any doubt about who won that battle, I'll give you a hint: not me.

The next day we had breakfast at the resort's restaurant and then hiked to Sol Duc Falls - a short (1.6 miles round trip) and scenic hike. The path was snowier than I expected. We didn't see many other people, which was nice. Here is a video of the falls (Seth and I are on the bridge over the river gorge and then Grandma arrives):

We returned to the hot springs and took another soak. I played Mille Borne with Seth and then took a nap. Then, while Grace got a massage and my mom read by the river in one of the nice wooden swinging benches, I took Seth and Miles on a walk. Here's a video of them playing on the rocks that line the road:

Then we took a path that didn't go exactly where I thought it would, so we had to bushwhack a little, which I think was a good adventure for the boys. We returned to the cabin. Here's a video of Seth and Miles wrestling on the bed (notice how Seth holds Miles's head to protect him - I remember doing that for Seth when we used to wrestle) and Grace returning from her massage:

We had dinner at the resort's restaurant. Friendly service, OK food. I went to bed early again because I wasn't feeling well.

The next day we had breakfast at the resort's restaurant and then took one last soak in the hot pools. Then we had to pack up and check out. We drove back to Port Townsend and had lunch at a creperie (good call Mom!). I had a yummy Nutella and banana crepe. It was a beautiful sunny day and we had some time to walk around Port Townsend, although I stayed in or near the car because I was tired. We took the ferry back to Keystone and drove back to Bellingham. All in all, it was a nice weekend. We lucked out with the sunny weather. I'm just sorry I didn't feel better (a combination of pain, fatigue, and upset stomach), but I still enjoyed the trip and the company.

Here is a link to some photos from the trip: http://remmel.shutterfly.com/2460
Here is a link to some photos that Grace took: http://gracesadventures.shutterfly.com/193

Ethan

Fun weekend plans

Grace, Miles, Seth, my mom, and I are leaving soon for Sol Duc Hot Springs in Olympic National Park, returning Sunday evening. Should be fun!

Ethan