Sunday, May 29, 2011

Goodbye Eric

My best friend Eric left tonight, back to North Carolina. I think it was last Tuesday that he proposed to visit. We said yes, and he was here Thursday. It was great to see him, even though I wasn't feeling great (the usual suspects, pain and fatigue, plus loss of appetite). My boys were happy to see him, especially Seth, who is very attached to Eric. It is bittersweet for me to watch Seth and Eric play physically the way that Seth and I used to (wrestling, rough-and-tumble). But I feel so achy and fragile these days - tonight Miles climbed into my lap to cuddle, which was great except that his weight actually hurt, and when he got down suddenly I had to gasp because it hurt so much. It made me really sad to think that I can't even enjoy a cuddle anymore. Both boys have been very nice and solicitous toward me lately, as if they can sense that I am fragile and need to be treated tenderly. I only took a few pictures during Eric's visit; here they are:




Friday, May 27, 2011

Two good quotes

1. From an article on Gandhi by Pankaj Mishra in the May 2 issue of The New Yorker (http://www.newyorker.com/arts/critics/books/2011/05/02/110502crbo_books_mishra):

"Gandhi's greatest contribution to the arsenal of political activism, however, is his theory and practice of bringing together great masses of highly motivated and disciplined protesters in public spaces. Here his spiritual beliefs were crucial: the assumption, in particular, that, regardless of the regime people lived under - democracy or dictatorship, capitalist or socialist - they always possessed a freedom of conscience, an inner capacity to make moral choices in everyday life. As his mass campaigns often proved, and the recent Arab uprisings have affirmed, such strongly self-aware individuals acting cooperatively in the spotlight of the world media could come to wield an astonishing amount of moral authority - the "authentic, enduring power" of people that, as Hannah Arendt wrote in her analysis of the Prague Spring of 1968, a repressive regime or government could neither create nor suppress through the use of terror, and before which it must eventually surrender."

The "freedom of conscience" part reminds me of Victor Frankl.

2. From an article by Laura Carstensen (Stanford psychology professor) and colleagues that I used in my lifespan psychological development class last week (citations removed from quote):

"Although there is no doubt that people experience an increasingly disproportionate number of losses as compared with gains as they age, and fully expect such changes to occur, we argue that the program of research we have outlined contributes an important complement to theoretical models that presume age differences reflect the accommodation to actual or even anticipated loss. In our theoretical formulation, loss is not a precondition for change; rather many changes reflect proactive shifts due to the salience of different goals at different points in the life cycle. Something in the finite nature of time appears to make life precious, especially as the end nears. Within this framework, age changes may reflect increased appreciation of life rather than despair about loss."

Carstensen, L. L., Isaacowitz, D. M., & Charles, S. T. (1999). Taking time seriously: A theory of socioemotional selectivity. American Psychologist, 54, 165-181.

Sunday, May 22, 2011

Sunday evening update

After a winter of many false springs, we are having a spring of many false summers. For example, it was sunny and warm on Friday, but cooler and wetter this weekend. On Friday I took a few pictures with Grace's camera. Miles fell asleep in a chair on the deck, so Grace let him nap there:


My mom's friend Lynne Breen visited from Maine Wednesday to Saturday, and was so much fun that both boys became attached to her even on such a short visit. Here Lynne, my mom, and Seth are playing baseball in the yard:




I got Miles a new garbage truck to add to his collection. Seth also got a cute jester hat for Miles (free because the propeller on top was broken). Miles calls it his "acrobat hat." Here are Seth and Miles (wearing the acrobat hat) playing with the new garbage truck:






I am very physically debilitated lately. I feel like a 90-year-old, or what I imagine a 90-year-old feels like, although I'm sure there are plenty of 90-year-olds out there who could kick my a** right now. The other day I was doing a tiny bit of yard work and I crouched down to dig out a dandelion. After digging it out, I thought "Uh oh, I don't think I can stand up from this position." I considered flopping over onto my side and trying to get up from there, but I wasn't sure that would be any better. Finally I got a hand positioned under me and pushed up to a stand, but it was close.

My appetite has been poor lately, and as a result I have fallen 15 pounds below my normal weight. I am unhappy about this, but even foods that I normally like seem unappealing and give me a stomachache. I am subsisting on Grace's smoothies, which I still find appealing.

I always thought that the last time I played basketball, I would know it was the last time, and it would feel momentous. But I can't remember the last time that I played. I could figure it out, but I don't want to, because I hope it wasn't the last time, but I'm afraid that it might have been. I'm a long way from playing basketball right now.

Speaking of basketball, I saw the end of the Bulls-Heat game tonight, won by the Heat. When LeBron and D-Wade buckle down on defense, the Heat are pretty scary-good. But the Heat's approach offends my basketball aesthetic. It's basically: "We're going to win because our two best players are better than your two best players. Our crunch-time offense will consist of one of those two taking his man one-on-one, while the other four guys watch." Not exactly the 1986 Celtics.

Ethan

A little about me, a lot about sports...

I woke up last night but I was still dreaming. In reality I was sleeping in the guest bedroom, but in my dream I was sleeping on the futon in the play room when I woke up and saw Grace sitting at the other end of the futon, looking at me with a beautiful warm smile. I smiled myself and felt filled with warmth and happiness. Then I woke up for real, in the guest bedroom, but I was still smiling and I could still feel the warmth, like a stone that's been in the sun all day.

I'm worried that the pain is increasing faster than our ability to catch up to it, much less stay ahead of it. Last Tuesday, we switched from the painkiller combo of fentanyl, methadone, and oxycodone, which wasn't working well, to Dilaudid (hydromorphone) delivered by a pump (an annoying little gadget that I have to carry around) subcutaneously (through a tube and a needle stuck into my belly). Hospice calculated the dose of Dilaudid equivalent to my combined doses of the previous painkiller combo (lots of guesstimation required) and set the pump initially to deliver a continuous rate of .9 mg per hour, with demand doses of .5 mg available by pressing a button. We've had to increase that almost every day, so that now the continuous rate is 5.0 mg per hour and the demand doses are 2.5 mg each (limited to one every 10 minutes). The point being, we've increased my dosage a lot and I am still in a lot of pain.

Tomorrow one of the hospice nurses is coming over to switch me from subcutaneous delivery to intravenous through the port in my chest. We're hoping that will be more effective.

Sports update:
Basketball: The Celtics were knocked out of the NBA playoffs by the Miami Heat. I was disappointed but not that disappointed because the Celtics haven't looked championship-caliber since mid-season. They gambled by signing Shaq and trading away Kendrick Perkins. Shaq was fun for a while, until his inevitable injuries (350+ pounds, 39 years old). Maybe they should have just kept him in the gym until the playoffs. If the Celtics had re-signed Tony Allen (dubbed "Trick or Treat" Tony by Bill Simmons for his inconsistent play for the Celtics) and if Allen had developed like he did this year in Memphis, then maybe they wouldn't have felt the need to trade Perkins to get Jeff Green. If, if, if... The truth is, even the most deluded Celtics fans like me should admit that the window for winning championships with this core of players has closed. Now they have the unenviable choice of keeping this core of players and watching them gradually deteriorate, or blowing this team up, rebuilding around Rondo and Green, and hoping to get lucky in the draft.

Of the four teams left (Chicago Bulls, Miami Heat, Dallas Mavericks, Oklahoma City Thunder [formerly the Seattle SuperSonics]), I'm not sure who I am rooting for. My (temporary) allegiance is available for a small fee or even just a good argument.
Bulls: Derrick Rose is fun to watch but Joakim Noah is painfully annoying. They do have ex-Celtics Brian Scalabrine and Tom Thibodeau (coach).
Heat: Dwyane Wade is one of my favorite players to watch, but I can't root for the Heat, especially after they beat the Celtics. They do have ex-Celtic Eddie House.
Mavericks: I've never liked Dallas (the city or the team), but they might be my favorite of these four! I like the way they're playing. Dirk has been fun to watch. And they have Jason Kidd, a Bay Area boy from back in the day (and source of one of Grace's favorite sports quotes - after leaving Cal, Grace's alma mater, and being drafted by the Mavericks: "We're going to turn this team around 360 degrees!").
Thunder: I don't like the city (not that I've ever been there, but I can just tell), especially after they stole Seattle's team. They have a bunch of exciting young players. I like Serge Ibaka, especially his name (Bill Simmons: "he sounds like the villain in a James Bond flick"). Actually, looking over their roster, they've got some cool names: Thabo Sefolosha, Royal Ivey. I still resent James Harden for not trying at all during his only NCAA tournament appearance (only 9 and 10 points in two games despite being the most talented player on the floor) and thereby damaging my bracket that year. They have ex-Celtic Kendrick Perkins (I refuse to consider Nate Robinson an ex-Celtic).

Baseball: after poor starts, the World Champion San Francisco Giants and the Boston Red Sox have both recovered, with the Giants in first place in the NL West and the Red Sox blowing a chance to take the lead in the AL East tonight. Seth and I watched the last couple innings of Tim Lincecum's 3-hit shutout tonight. Giants third baseman Pablo "Kung Fu Panda" Sandoval lost weight in the offseason and was hitting great before breaking a bone in his hand (should be out 2-3 more weeks). Boston's offseason signing of first baseman Adrian Gonzalez has paid off so far (leads the league in hits and RBI), although their signing of outfielder Carl Crawford has not (.213 average), and last year's big signee, starting pitcher John Lackey, was ineffective before getting injured. Overall, I like the Giants' chances better, although their combination of excellent pitching and weak hitting promises a lot more nailbiters this season.

Hockey: my two favorite teams, the Boston Bruins (since childhood) and the Vancouver Canucks (since 2002), are among the four teams left and could meet in the NHL finals. I would root for Boston, no doubt, although this area would be really happy if the Canucks won. The Bruins beat Philadelphia in the second round (sorry George!), overcoming the memories of last year's epic collapse against the Flyers (I admit to having a little soft spot for the Flyers, as they were the parent club for the Maine Mariners, the AHL team to which my family had season tickets when I was a kid).

Ethan

Wednesday, May 18, 2011

Wednesday update

Hi Everyone,

Ethan is receiving a blood transfusion today.  Our Hospice nurse Hannah drew blood yesterday, believing that he's anemic (he is).  The low blood numbers are likely the result of his several radiation treatments -- external and Strontium -- over the past month. 

So, he's at the Outpatient Ward of the hospital today.  In the past, the transfusions were helpful in getting Ethan's energy levels back up.  So, let's hope for the best again! 

On a positive note, the sun has finally appeared in Bellingham, after what has seemed like a long absence. 

~Grace

Monday, May 16, 2011

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

Friday, May 13, 2011

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

Thursday, May 12, 2011

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

Saturday, May 7, 2011

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

Thursday, May 5, 2011

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

Monday, May 2, 2011

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